Living with hepatitis C and treatment: The personal experiences of patients

Royal Prince Alfred Hospital, Missenden Road, Camperdown, NSW 2050, Australia.
Journal of Clinical Nursing (Impact Factor: 1.26). 09/2009; 18(16):2282-91. DOI: 10.1111/j.1365-2702.2009.02806.x
Source: PubMed


The purpose of the study was to explore the issues surrounding chronic hepatitis C, combination therapy and its impact on personal relationships to enhance understanding of the experiences of patients living with hepatitis C. This paper focuses on the experiences of the patients and their partners' experiences will be published separately.
Patients with chronic hepatitis C who have active inflammatory changes on liver biopsy may undergo combination therapy with interferon and ribavirin. For some patients, the adverse effects of combination therapy are so severe that it can potentially place an enormous stress on personal relationships.
The study was informed by Heideggerian phenomenology.
Purposive sampling and semi-structured interviews of five patients and their partners were conducted between 2004-2006 in Sydney Australia, to obtain a rich description of their experiences.
The findings from this study revealed that chronic hepatitis C and combination therapy had an enormous impact on the lives of the patients, their partners and families. The illness and treatment had significant physiological effects that had an impact on quality of life; however, the social and psychological consequences of living with a highly stigmatised disease with an unknown course and outcome cannot be underestimated.
The results of this study lend support to the effectiveness of providing equitable services to persons diagnosed with chronic hepatitis C. However, additional research is needed to explore gender, socioeconomic, sexual-orientation, transmission, cultural, religious and genotype differences in this group to address their needs better.
Nurses play a significant role in educating patients with chronic hepatitis C, advocating for them and helping them to achieve a reasonable state of well being. Through deeper understanding of their experiences of illness and treatment, nurses can move beyond the medical oriented approach to care.

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Available from: Debra Jackson, Oct 10, 2015
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    • "Participants had difficulty with social and occupational functioning, while some received valued support from others for their condition. Living with chronic HCV often had a psychological impact Domains: informational/educational, practical, psychological Sgorbini et al (2009) 23 Australia Hepatitis C (5 patients and their partners) Semistructured interviews—Interviews began with an open-ended question: 'Living with hepatitis C and undergoing Patients' experiences—Chronic hepatitis C and combination therapy had an enormous impact on the lives of the patients, their partners and families. The illness and "
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    ABSTRACT: People with chronic liver disease, particularly those with decompensated cirrhosis, experience several potentially debilitating complications that can have a significant impact on activities of daily living and quality of life. These impairments combined with the associated complex treatment mean that they are faced with specific and high levels of supportive care needs. We aimed to review reported perspectives, experiences and concerns of people with chronic liver disease worldwide. This information is necessary to guide development of policies around supportive needs screening tools and to enable prioritisation of support services for these patients. Systematic searches of PubMed, MEDLINE, CINAHL and PsycINFO from the earliest records until 19 September 2014. Data were extracted using standardised forms. A qualitative, descriptive approach was utilised to analyse and synthesise data. The initial search yielded 2598 reports: 26 studies reporting supportive care needs among patients with chronic liver disease were included, but few of them were patient-reported needs, none used a validated liver disease-specific supportive care need assessment instrument, and only three included patients with cirrhosis. Five key domains of supportive care needs were identified: informational or educational (eg, educational material, educational sessions), practical (eg, daily living), physical (eg, controlling pruritus and fatigue), patient care and support (eg, support groups), and psychological (eg, anxiety, sadness). While several key domains of supportive care needs were identified, most studies included hepatitis patients. There is a paucity of literature describing the supportive care needs of the chronic liver disease population likely to have the most needs-namely those with cirrhosis. Assessing the supportive care needs of people with chronic liver disease have potential utility in clinical practice for facilitating timely referrals to support services. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to
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    • "Such actions vary based on the persons’ perceptions, experiences and expertise, but share the focus of optimizing health outcomes and improving overall wellness [19, 20]. During the course of HCV, patients have to deal with numerous self-management tasks, including: a) understanding the facts about HCV; b) making lifestyle changes to maximize liver health; c) coming to terms with their diagnosis, mortality and transmission probabilities d) dealing with disclosure, discrimination and stigma; e) organizing emotional support; f) managing the disease alongside work and family; and g) making ongoing treatment decisions [21–23]. Once a patient has made the decision to start treatment, the integration of dual or triple therapy into daily life and the management of symptoms become central self-management tasks with major impacts on health outcomes. "
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    • "We know that the experience of being LGBT is associated with increased risk of mental health problems, problematic alcohol and drug use and that many people also experience discrimination (or expect to) in seeking health services. For LGBT people considering HCV or drug treatment, the absence of a supportive network may place additional stressors with previous research showing improved success for people with greater social support (Hopwood et al. 2006, Laudet 2008, Sgorbini et al. 2009, Dore et al. 2010). The absence of discussion of sexuality in PWID literature, despite the high prevalence of LGBT PWID, raises questions about the provision of culturally safe health-care. "
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