Objective: To explore psychosocial factors that impact on quality of life for people living with self-reported chronic hepatitis C.
Methods: A purposeful sample of 70 people who were self-identified as being hepatitis C virus (HCV)-positive was recruited through a variety of institutions and community agencies. Semi-structured interviews were held with 12 groups and 21 individuals. A qualitative grounded-theory methodology was used for data collection and analysis. Experiences of physical and psychological symptoms, stigma and discrimination, and living with an infectious disease, were explored using matrices.
Results: Phenomena emerging from the data included previously undocumented illness `attacks' that were associated with depressive symptoms and a perception of hepatitis C as fatal. Uncertainty related to disease progression and transmission of the virus were common experiences among participants. A universal experience was fear and anxiety about stigma and discrimination.
Discussion: The findings of this study indicate that chronic hepatitis C has a pervasive impact on quality of life with a complexity that has not been explored with quantitative research approaches. Primary healthcare professionals need to be alert to the psychological and social impacts of chronic hepatitis C and to avoid behaviours that lead to perceptions of stigma and discrimination. The research indicates a need for further investigation into the relationship between psychosocial factors, disease management and disease progression.
Perz JF, Farrington LA, Pecoraro C., Hutin Yjf, Armstrong GLEstimated global prevalence of hepatitis C virus infection. Paper presented at: 42nd Annual Meeting of the Infectious Diseases Society of America, Boston, 2004.
2.
Tong MJ, El-Farra NS, Reikes AR, Co RLClinical outcomes after transfusion associated hepatitis C. N Engl J Med1995; 332: 1463—6.
3.
Bonkovsky HL , Wooley JMReduction of health related quality of life in chronic hepatitis C and improvement with interferon therapy. Hepatology1999; 29: 264—8.
4.
Ware JE, Bayliss MS, McHutchison JG, et al. Impact of therapy with interferon alpha-2B plus ribavirin on health-related quality of life and work productivity in chronic hepatitis C patients. J Hepatol2001; 34(1): 140—7.
5.
MacDonald M., Zhou J.Prevalence of HIV, HCV and injecting and sexual behaviour among IDU at needle and syringe programs: Australian NSP survey national data report 1995—2001 , Sydney: National Centre in HIV Epidemiology and Clinical Research, 2002.
6.
Obhrai J., Hall Y., Anand BSAssessment of fatigue and psychologic disturbances in patients with hepatitis C virus infection. J Clin Gastroenterol2001 ; 32: 413—17.
7.
Fontana RJ, Hussain KB, Schwartz SM, Moyer CA, Su GL, Lok Asf.Emotional distress in chronic hepatitis C patients not receiving antiviral therapy. J Hepatol2002; 36: 401—7.
8.
Hilsabeck RC, Hassanein TI, Carlson MD, Ziegler EA, Perry W.Cognitive functioning and psychiatric symptomology in patients with chronic hepatitis C. J Int Neuropsychol Soc2003; 9: 847—54.
9.
Kramer L., Bauer E., Funk G., et al. Subclinical impairment of brain function in chronic hepatitis C infection. J Hepatol2002; 37: 349—54.
10.
Crofts N., Louie, R., Loff B.The next plague: stigmatisation and discrimination related to hepatitis C virus infection. Health Hum Rights1996; 2: 86—97.
11.
Dunne EA, Quayle E.The impact of iatrogenically acquired hepatitis C infection on the well-being and relationships of a group of Irish women. J Health Psychol2001; 6: 679—92.
12.
Grundy G., Beeching N.Understanding social stigma in women with hepatitis C. Nurs Stand2004; 19: 35—9.
13.
Pope C., Mays N.Researching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research. BMJ1995; 311: 42—44.
14.
Lang CA, Conrad S., Garrett L., et al. Symptom prevalence and clustering of symptoms in people living with chronic hepatitis C infection. J Pain Symptom Manag2006; 31(4): 335—44.
Corbin J., Morse JMThe unstructured interactive interview: issues of reciprocity and risks when dealing with sensitive topics. Qualitative Inquiry2003; 9: 335—54.
17.
Scholarli. QSR NUD*IST, Version 4. Melbourne, 1997.
18.
Strauss A., Corbin J.Basics of qualitative research: techniques and procedures for developing grounded theory, 2nd edn. Thousand Oaks : Sage Publications, 1998.
19.
Dey I.Qualitative data analysis: a user friendly guide for social sciences. New York: Routledge, 1993.
20.
Miles MB, Huberman AMAn expanded sourcebook, qualitative data analysis. Thousand Oaks: Sage Publications, 1994.
21.
Blaikie N.Designing social research. Cambridge: Polity Press, 2000.
22.
Mays N., Pope C.Assessing quality in qualitative research. BMJ2000; 320: 50—2.
23.
Albrecht GL , Devlieger PJThe disability paradox: high quality of life against all odds. Soc Sci Med1999; 48: 977—88.
24.
Miaskowski C., Dodd M., Lee K.Symptom clusters: the new frontier in symptom management research. J Natl Cancer Inst Monogr2004; 32: 17—21.
25.
Crockett B. , Gifford SM `Eyes wide shut': narratives of women living with hepatitis C in Australia. Women Health2004; 39: 117—37.
26.
McCain NL, Cella DFCorrelates of stress in HIV disease. WesternJ Nurs Res1995; 17: 141—55.
27.
Brashers DE , Neidig JL, Reynolds NR, Haas SMUncertainty in illness across the HIV/AIDS trajectory. J Assoc Nurses AIDS Care1998; 9: 166—72.
28.
Wessely S., Pariante C.Fatigue, depression and chronic hepatitis C infection. Psychol Med2002; 32: 1—10.
29.
Munoz Sastre M, Bacq Y., Mullet E., Clay Sorum P.Misconceptions regarding hepatitis C in the French public. Prev Med2002; 34: 596—9.
30.
Holt R., Court P., Vedhara K., Nott KH, Holmes J., Snow MHThe role of disclosure in coping with HIV infection. AIDS Care1998; 10: 49—60.
31.
Gupta L., Puech MC, Ward JEService expectations, self-reported educational and resource needs of general practitioners in managing patients with hepatitis C. Drug Alcohol Rev2000; 19: 65—71.
32.
Tanguy G., Remy A-J., Veyrac M., Daures J-P., Larry D.Effects of antiviral treatment on the quality of life in patients with chronic hepatitis C. Hepatology1999; 30: 636A.
