Help-seeking and coping with the psychosocial burden of chronic hepatitis C: A qualitative study of patient, hepatologist, and counsellor perspectives

School of Psychology, University of Adelaide, Australia.
International journal of nursing studies (Impact Factor: 2.25). 12/2011; 49(5):560-9. DOI: 10.1016/j.ijnurstu.2011.11.004
Source: PubMed

ABSTRACT Chronic hepatitis C affects millions of people worldwide, may have significant physical consequences, and patients are also at increased risk of psychiatric morbidity. However, it is currently unknown how patients cope with, and seek help for the psychosocial issues which contribute to this psychiatric morbidity.
This study aimed to qualitatively explore the biopsychosocial burden of chronic hepatitis C, patients' subsequent coping and help-seeking, and the patient-health professional relationship from the different perspectives of patients, hepatologists, and counsellors.
Thirteen patients, five hepatologists, and two hepatitis C specific counsellors from South Australia participated in semi-structured interviews, which were audio-recorded, transcribed verbatim, and analysed thematically.
All groups perceived chronic hepatitis C as a severe disease involving inextricably intertwined biological, psychological, and social impacts. Negative factors included the impact of diagnosis, stigmatisation, and often unwarranted fears regarding transmission and disease progression. The key positive influences reported across the groups involved information provision and access to informal and formal support. However, a number of barriers were noted to accessing this support, particularly stigmatisation. All respondents highlighted the importance of the patient-health professional relationship. This relationship was perceived to be enhanced by empathetic, compassionate professionals who provided comprehensive information in a sensitive and timely manner. Key negative influences on this relationship included discrimination or inappropriate treatment from mainstream health professionals, time constraints of doctors, patient non-attendance, and discordant views regarding treatment decisions.
Reducing the psychosocial impact of chronic hepatitis C requires targeted information provision for patients, the general public, and mainstream health services. This may increase patient education, reduce the extent and impact of stigmatisation, remove barriers to help-seeking, and improve the patient-health professional relationship.

Download full-text


Available from: Jane M Andrews, Aug 10, 2015
  • [Show abstract] [Hide abstract]
    ABSTRACT: BACKGROUND: Hepatitis C virus (HCV) affects 170 million worldwide. Currently, around 30% of patients receiving interferon-alpha (IFN-α) treatment for HCV experience clinically significant depression. Effective and timely detection of depression is crucial to ensuring appropriate treatment and support. However, little is known about how clinical nurse specialists identify patients at risk of developing interferon-alpha-induced depression, and monitor those receiving antiviral treatment for the occurrence of depression. OBJECTIVE: This study aimed to gain an in-depth understanding of staff experience of, and attitudes towards, the identification and monitoring of interferon-alpha-induced-depression and the decision-making process concerning the use of liaison psychiatry and other clinical services. DESIGN: A qualitative interview study was conducted among clinical staff involved in the care of patients with hepatitis C, using the perspective of naturalistic decision making. SETTINGS: Outpatient liver clinics in three large teaching hospitals in South London, the United Kingdom. PARTICIPANTS: All clinical nurse specialists from the three outpatient liver clinics were included. All were involved directly in the care of patients receiving interferon-alpha treatment and had at least one year experience (mean 6.4years, range 1-11years) in this field. METHODS: Semi-structured face-to-face interviews were conducted between 2010 and 2011. Data collection and analysis were carried out iteratively to ensure the reliability of the analysis using the constant comparison method. RESULTS: Staff used verbal and non-verbal cues when assessing risks of patients developing depression before and during IFN-α treatment. Major sources of uncertainty were patient engagement and familiarity, referrals to psychiatrists, language barriers, and distinguishing between psychological and physical symptoms. Good rapport with patients and good communication among multidisciplinary professional groups were key strategies identified to reduce uncertainty. CONCLUSION: Current methods of identifying vulnerable patients rely on the availability of clinical experts and good communication within a multidisciplinary team. Detection and management of depression in this population is complex, however, various strategies are employed by nurses to overcome difficulties when making decisions regarding patient welfare. Current clinical practices should be taken into account when developing new tools and methods.
    International journal of nursing studies 08/2012; 49(12). DOI:10.1016/j.ijnurstu.2012.07.016 · 2.25 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Despite the prevalence of psychiatric co-morbidity in chronic hepatitis C (CHC), treatment is under-researched. Patient preferences are likely to affect treatment uptake, adherence, and success. Thus, the acceptability of psychological supports was explored. A postal survey of Australian CHC outpatients of the Royal Adelaide Hospital and online survey of Australians living with CHC was conducted, assessing demographic and disease-related variables, psychosocial characteristics, past experience with psychological support, and psychological support acceptability. The final sample of 156 patients (58 % male) had significantly worse depression, anxiety, stress, and social support than norms. The most acceptable support type was individual psychotherapy (83 %), followed by bibliotherapy (61 %), pharmacotherapy (56 %), online therapy (45 %), and group psychotherapy (37 %). The most prominent predictor of support acceptability was satisfaction with past use. While individual psychotherapy acceptability was encouragingly high, potentially less costly modalities including group psychotherapy or online therapy may be hampered by low acceptability, the reasons for which need to be further explored.
    Journal of Clinical Psychology in Medical Settings 06/2013; DOI:10.1007/s10880-012-9339-7 · 1.49 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Much of the research to date on barriers to treatment for patients with hepatitis C has approached the problem from either the perspective of the medical provider or the healthcare system. To better understand these barriers from the patients' perspectives, nine exploratory focus groups of patients with hepatitis C (N=48) were conducted in 2008 and 2009, using a hybrid qualitative analysis. Eight content categories emerged. Treatment-related issues, including barriers to care, were most emphasized, representing nearly one-half of the entire content. Need for accurate disease-related information was also extensively discussed. Social factors were important, including considerable focus on stigma. Participants described coping abilities including faith and perseverance. Areas of concern expressed in these focus groups represent underexplored areas that may warrant additional attention or areas for intervention and investigation, such as exploring differences between perceptions of patients and providers regarding the hepatitis C treatment process and addressing barriers to care.
    European journal of gastroenterology & hepatology 06/2013; 26(1). DOI:10.1097/MEG.0b013e32836382b5 · 2.15 Impact Factor
Show more