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

Abstract

Background

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.

Objectives

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.

Methods

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.

Results

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.

Conclusions

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.

Introduction

Hepatitis C virus is a blood-borne infection affecting the liver. There are approximately 264,000 (1.3%) hepatitis C carriers in Australia (Razali et al., 2007) and 130–170 million (2.2–3.0%) worldwide (Lavanchy, 2009). Of those acutely infected with hepatitis C virus, approximately 75% fail to spontaneously clear the virus and develop chronic hepatitis C infection (Micallef et al., 2006). When the cellular immune response fails to clear the virus, chronic inflammation of the liver and hepatocellular injury may result (Liang et al., 2000). Thus, chronically infected patients may experience gradual disease progression through various stages of liver histological fibrosis with accompanying physical symptomatology and approximately 15–20% may, after a number of decades, experience liver cirrhosis, liver failure, or hepatocellular carcinoma (Liang et al., 2000).

While the physical consequences of chronic hepatitis C constitute a significant global public health problem, the psychological burden experienced by those suffering from chronic hepatitis C is also considerable. Psychiatric disorders are highly prevalent in chronic hepatitis C patients, particularly for mood, anxiety, and substance use disorders (Butt et al., 2006, el-Serag et al., 2002, Golden et al., 2005). Furthermore, psychological co-morbidities are one of the primary influences in the diminished quality of life experienced by chronic hepatitis C patients (Bonkovsky et al., 2007, Gutteling et al., 2010, Häuser et al., 2004).

Moreover, the current antiviral treatment regime for chronic hepatitis C can induce depression in up to 44% of patients during treatment which can exacerbate pre-existing psychiatric conditions (Loftis et al., 2006). Patients undergoing antiviral treatment with higher baseline depressive symptomatology are at increased risk for experiencing depression and anxiety (Hauser et al., 2002, Martín-Santos et al., 2008, Raison et al., 2005). Research has also demonstrated higher dropout rates in former intravenous drug users, methadone-maintenance patients (Schaefer et al., 2007), and patients with higher baseline depressive symptomatology (Evon et al., 2009). Poorer treatment adherence has also been reported in patients with depression or anxiety (Martín-Santos et al., 2008). Thus, patients with psychological co-morbidities are at increased risk of failing therapy and therefore failing to clear the virus.

Consequently, alleviating the psychological burden of chronic hepatitis C may improve antiviral treatment outcomes, in addition to improving the wellbeing and quality of life of chronic hepatitis C patients. Various factors contribute to the psychological burden of chronic hepatitis C, including: pre-existing high rates of alcohol and drug use disorders among chronic hepatitis C patients (Butt et al., 2007, Yovtcheva et al., 2001); a direct neurobiological effect of hepatitis C virus in reducing tryptophan levels (Cozzi et al., 2006) and altering the serotonergic and dopaminergic pathways in the brain (Weissenborn et al., 2006); and the impact of various psychosocial factors, including stigmatisation (Moore et al., 2008, Zickmund et al., 2003), feelings of contamination (Conrad et al., 2006, Fraser and Treloar, 2006), the impact of diagnosis and antiviral treatment (Sgorbini et al., 2009), and fears regarding disease progression, premature death, and transmission of the infection to others (Groessl et al., 2008, Minuk et al., 2005).

However, there is a paucity of research regarding what chronic hepatitis C patients do when they are experiencing these psychosocial difficulties. The access to informal support may be critical, as research has demonstrated a relationship between low social support and increased psychiatric morbidity, perceived physical symptomatology (Blasiole et al., 2006), depression (Golden et al., 2005), and treatment induced depression (Evon et al., 2009). However, the fear of disclosing their chronic hepatitis C status and experiencing stigmatisation can prevent many patients from accessing informal support (Blasiole et al., 2006, Conrad et al., 2006).

Consequently, external sources of formal support are likely to be of great importance. A meta-analysis of 15 randomised controlled trials found that cognitive behavioural interventions are effective in reducing depression, anxiety, anger, and stress in patients with human immunodeficiency virus, another chronic viral infection which shares many factors with chronic hepatitis C (Crepaz et al., 2008). A recent study found that administering cognitive behavioural and interpersonal psychotherapy to chronic hepatitis C patients undergoing antiviral therapy reduced the rate of onset of severe psychiatric manifestations and reduced the need for antidepressant or benzodiazepine prescription (Neri et al., 2010).

However, there are numerous potential barriers to seeking formal and informal support. Firstly, stigma has been found to weaken social support structures and present barriers to help-seeking from informal and formal sources of support in chronic hepatitis C patients (Blasiole et al., 2006, Crockett and Gifford, 2004, Hopwood et al., 2010). There may also be structural barriers, with one survey finding that despite three quarters of gastroenterologists recognizing the prevalence of psychiatric co-morbidity, just one in ten referred patients to a mental health professional due to a perceived lack of access to services (Gleason et al., 2008).

Health professionals may be the key point of promotion and referral with regard to formal support services. However, in order to gain support, or referrals to support, from health professionals, patients need to communicate their psychosocial problems to the health professional, yet communication difficulties between chronic hepatitis C patients and physicians are common (Zickmund et al., 2004). This, in turn, may be compounding poor communication surrounding psychosocial issues resulting in a lack of referral and provision of mental healthcare to chronic hepatitis C patients. For example, many Australian general practitioners (GPs) report difficulties with the psychosocial management of chronic hepatitis C patients and discussion of psychosocial issues (Gupta et al., 2006). In an Australian qualitative study, young women with chronic hepatitis C reported feeling that they were not receiving sufficient information, follow-up care, or referrals regarding support services from their doctors (Crockett and Gifford, 2004). Another two Australian studies of 462 women (Gifford et al., 2003) and 302 men (Gifford et al., 2005) with chronic hepatitis C reported that just over a quarter reported receiving information about support groups.

In summary, evidence suggests that accessing informal and formal support may ameliorate the psychosocial burden of chronic hepatitis C. This has the potential to improve not only psychological well-being, but physical well-being also through the optimization of antiviral treatment outcomes. However, the utilisation of, and barriers to seeking, this support is not fully understood. The present study was thus conducted in order to qualitatively explore the psychosocial impact of chronic hepatitis C, patients’ subsequent reactions, coping behaviour, and help-seeking, and the relationship between patients and health professionals.