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

Aim. 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. Background. 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. Design. The study was informed by Heideggerian phenomenology. Methods. 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. Results. 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. Conclusion. 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. Relevance to clinical practice. 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.