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HPQ0010.1177/1359105313506025Journal of Health PsychologyWare et al.
Article
The experience of hepatitis C treatment for people with a history of mental health problems: An interpretative phenomenological analysis
Journal of Health Psychology 2015, Vol. 20(7) 990–1001 © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1359105313506025 hpq.sagepub.com
K Ware1,2, J Davies2,3, G Rowse2 and S Whittaker1,2,4
Abstract This qualitative study explores the experience of hepatitis C virus treatment for people with pre-existing mental health problems within a large city hospital. Four men and four women with pre-existing mental health problems who had received hepatitis C virus treatment took part in semi-structured interviews which were analysed using interpretative phenomenological analysis. A central theme of ‘Self, stigma and change’ was identified which interlinked with three other main themes of ‘Coping and responding to treatment’, ‘Connectedness to others’ and ‘The impact of information’. These themes and their sub-themes are discussed in relation to existing literature and clinical practice guidelines.
Keywords hepatitis C, interferon, IPA, mental health, psychological impact of treatment
The Health Protection Agency (HPA) (2009) estimated that 185,000 individuals in the United Kingdom are chronically infected with the hepatitis C virus (HCV). In the United Kingdom, the most common route of HCV infection is through intravenous drug use (IDU) with the ‘Shooting Up’ report (HPA, 2011), suggesting that approximately 50 per cent of current or former intravenous drug users have HCV infection. Although a small minority of people may clear the virus themselves without treatment, over 70 per cent of people exposed to hepatitis C will develop a chronic infection requiring treatment (Hopwood and Treloar, 2005); of these, 5–10 per cent will develop cirrhosis of the liver after 20 years, and
3–5 per cent will develop liver cancer or liver failure within 50 years (Dore, 2001). 1Sheffield Health and Social Care Foundation NHS Foundation Trust, UK 2University of Sheffield, UK 3Abertawe Bro Morgannwg University Health Board, Cefn Coed Hospital, UK 4Looked After and Adopted Children’s Support & Therapeutic Team, Rotherham Metropolitan Borough Council, UK
Corresponding author: S Whittaker, Team manager, Clinical Psychologist, Looked After and Adopted Children’s Support & Therapeutic Team, Rotherham Metropolitan Borough Council, Psalters Centre, Kimberworth Rd, Rotherham S61 1HE, UK. Email: [email protected]
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Ware et al. Treatment for HCV has developed in recent years and in the United Kingdom, at the time of the research, guidelines recommended combination antiviral drug therapy with interferon-α (IFNα) and ribavirin (National Institute for Health and Clinical Excellence (NICE), 2004). Guidance updates (NICE, 2010, 2012a, 2012b) added a third medication to the regime, where indicated, to enhance effectiveness. However, around 80 per cent of patients with genotypes 1–3 will clear the virus (Manns et al., 2001; NICE, 2006, 2012a, 2012b; Poll, 2012a, 2012b). A number of physical and psychological side effects have been reported, ranging from mild depression, fatigue, irritability, lack of concentration and motivation to severe depression with suicidal ideation, mania and psychotic symptoms (Schaefer et al., 2002). The most documented psychological side effect of HCV treatment is depression (Zdilar et al., 2000) with reported rates ranging from 2 per cent to 41 per cent across studies (Crone and Gabriel, 2003). Although much less common, psychotic symptoms, mood instability and manic symptoms have been reported during HCV treatment (Fattovich et al., 1996; Iancu et al., 1997). Completed suicides have been reported (Janssen et al., 1994), with Sockalingam et al. (2011) suggesting that the first 12 weeks of IFNα therapy are a high-risk period for suicide. Many of the reported psychological side effects of treatment have been observed in patients without a prior history of mental health problems. Consequently, there have been concerns about the use of HCV treatment with people who have pre-existing mental health problems. Guidelines in the United Kingdom recommended that people with preexisting mental health problems should not receive HCV treatment (Booth et al., 2001; NICE, 2004). As a result, it has been estimated that up to half of all people eligible remain untreated due to pre-existing mental health or substance use problems (Schaefer et al., 2003). There is a growing body of literature suggesting that people with past or pre-existing
mental health problems can receive HCV treatment if their programme of care is prepared for and managed effectively (e.g. Chainuvati et al., 2006; Schaefer et al., 2003; Sylvestre et al., 2004). Countries including the United States (National Institutes of Health, 2002) and Australia (Hopwood and Southgate, 2003) have recognised that individuals with pre-existing mental health or substance use problems can be effectively treated for HCV. In the United Kingdom, guidelines recommend that although mental health problems should still be considered contraindications for treatment, individuals should receive HCV treatment if their mental health problem is monitored and managed carefully (Royal College of General Practitioners, 2007). A review of the literature revealed only two published qualitative studies investigating the experience of people going through the HCV treatment process – one investigating the overall experience of interferon treatment for hepatitis C (Hopwood and Treloar, 2005) and the other looking at the experience of fatigue in hepatitis C (Glacken et al., 2003). The current study aims to explore the experience of HCV treatment for people with pre-existing mental health problems using qualitative methods in order to compliment and enrich the existing HCV literature.
Methodology Design A qualitative approach was used to capture participants’ lived experience of having HCV treatment and how they interpreted and made sense of the side effects. A number of approaches to study design and data analysis were considered, namely, Discourse Analysis (Potter and Wetherell, 1987), Grounded Theory (Glaser and Strauss, 1967), Narrative Analysis (Clandinin and Connelly, 2000) and Interpretative Phenomenological Analysis (IPA) (Smith et al., 1999). From these, IPA was selected as the study purpose was to explore the meaning and
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interpretation of individual experience. IPA enables an in-depth, thorough and detailed exploration of participants’ thoughts about a topic allowing the researcher to take an insider’s perspective while taking into account their own constructs and beliefs. IPA is also widely used in health psychology and in areas of clinical research where there are unexplored areas of psychological interest and in answering questions about personal meanings (Smith et al., 1995). ‘IPA is concerned with trying to understand lived experience and with how participants themselves make sense of their experiences. Therefore, it is centrally concerned with the meanings which those experiences hold for the participants’ (IPA@BBK, n.d.). Individual interviews were conducted using a semi-structured schedule based on guidelines for IPA (Smith, 1995), consultation of existing literature and through discussion with research supervisors. Open questions provided an interview framework with flexibility for both researcher and participant to explore avenues that emerged. Questions included, ‘Could you tell me about the treatment for hepatitis C that you received?’ and ‘How did you make sense of the side effects at the time?’ The interview schedule can be obtained from the authors upon request. Ethical approval and research governance were gained from the relevant National Health Service (NHS) ethics committees and research and development departments where the research was conducted.
Participants People were considered for inclusion if they had a pre-existing mental health problem prior to having received HCV treatment in the past. People were excluded if health care professionals involved in their care considered them to be too unwell (physically or psychologically) to take part, or if they were unable to speak English fluently. Nine people met the criteria and agreed to an interview. Technical difficulties prevented one interview from being completed; therefore, eight participants are included for analysis.
Interviews took place over a 13-week period in 2007. Four women and four men participated in the study, and the characteristics of the participants are shown in Table 1. All participants were White, of British origin and aged 44–61 years. All participants had received HCV treatment within the preceding 6 years, four of whom had been treated in the previous year. Two of the participants were a married couple. In order to ensure anonymity, pseudonyms have been used throughout and identifying information removed.
Procedure People meeting the inclusion criteria were identified and given an information sheet by the Clinical Psychologist (S.W.) working in the hepatitis C service hosting the research. Individuals interested in taking part and who gave their permission were contacted by the first author (K.W.) to arrange an appointment to meet and conduct the interview. At the start of the interview, the information sheet was reviewed, participants were briefed about the interview process and consent forms were signed. Demographic information and details of their HCV treatment were collected using a standardised form. Individual, semi-structured interviews were carried out during which participants were invited to talk about their experiences of receiving HCV treatment, their previous mental health problems and any side effects they encountered. Participants were encouraged to share their experiences and talk about what was important to them. Prompts were used to elicit more details where necessary. At the end of the interview participants were offered a £10 high street voucher to acknowledge the time and effort involved in attending for interview. Six of the nine interviews were carried out on University premises, two were within NHS buildings and one took place in the participant’s home. The length of interviews varied from 50 to 80 minutes. Interviews were audiotaped and field notes were made after each interview.
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Ware et al. Table 1. Demographic details of participants. Age
Route of transmission of HCV
Details of HCV treatment (and date)
Participant reported previous mental health problems
Participant reported side effects
Treatment outcome
Helen 46
IDU
6 months (2006– 2007)
Depression Anxiety Possible psychosis
Depression
Neil
44
IDU, blood transfusion or sexual intercourse
3 × periods of Drug addiction 6-month treatment, Depression stopped due to side effects/no effect (1997, 2002 and 2006)
Finishing treatment at time of interview and awaiting results Unsuccessful so far
Pam
52
6 months (2005)
Depression
Dave
46
IDU or tattoos IDU
6 months (2006)
Anxiety Paranoia Depression Hallucinations
Anxiety Depression
Finished treatment but awaiting results at time of interview
Bob Sue
61
IDU
6 months (2006)
Hallucinations
Successful
53
IDU
Bipolar Disorder with psychotic symptoms
46
IDU
44
IDU or transmitted from close family member
6 months but stopped early due to side effects (2001) 6 months but stopped early due to side effects (2003) 6 months (2004)
Depression Hallucinations Psychotic symptoms (inc. hallucinations) Hallucinations Homicidal thoughts
Nick Ann
Psychotic symptoms (inc. hallucinations) – unsure if caused by HCV treatment None Successful
Paranoia Anger and aggression Homicidal thoughts Depression Depression Suicide attempt following treatment
Unsuccessful
Unsuccessful but due to start again soon Successful
HCV: hepatitis C virus; IDU: intravenous drug use.
Data analysis Interview transcripts were analysed using the IPA guidelines from Smith et al. (1999). Interviews were transcribed verbatim by a professional audio-typist who was provided with
guidance to improve accuracy (MacLean et al., 2004). Standardised instructions and a confidentiality agreement were used for this (University of Sheffield, 2008 – available by request from the authors). Transcripts were verified for accuracy by the first author (K.W.)
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and comments relating to intonation or emotion inserted. Transcripts were read several times and preliminary notes, thoughts, observations and early interpretations were recorded in the left margin. Reflections and emerging themes were then recorded in the right margin. These themes were transcribed to separate pieces of coloured paper (one colour per participant) with location detail (i.e. transcript name, page and line). Themes were reviewed first at the participant level and then as a whole, with regular reference to the transcripts to consider emerging themes. Notes were also made in a research journal to record emerging ideas, decision making and other observations. Themes were then reviewed for clusters and links and the transcripts were reread, to establish confirming and disconfirming examples of themes and the overall credibility and fit of the final representation. Reflexivity was supported in a number of ways. A reflexive diary was kept throughout the process of data collection and analysis (Yardley, 2000), which provided a clear ‘audit trail’ enabling each stage of the research process to be discussed and decision making to be reviewed (Elliott et al., 1999). One of the collaborators audited one of the transcripts to check that initial themes and ideas were grounded in the data and to ensure that the process of deriving the themes was evidenced. The research team also checked that each of the final themes could be directly and clearly linked to individual participant data. Finally, the association of the researcher with the Clinical Psychologist in the HCV team and the £10 high street voucher reimbursement were considered as possible influences on participant responses, although no evidence of influence was noted.
Characteristics of the lead researcher The first author (K.W.) was a White 30-year-old female without hepatitis C, undertaking the research as part of her training in Clinical Psychology. She had little experience of working
with people with hepatitis C or substance use problems but had clinical experience of conducting sensitive interviews and of working with people with severe mental health problems. She also had an interest in how people make sense of and recover from mental health problems such as psychosis.
Results Four overlapping themes emerged from the participants’ accounts with ‘Self, stigma and change’ holding a central position between, and interlinking with, each of the other themes. The main themes together with each of the subthemes and illustrating quotes are provided in Table 2. All the participants contributed to each of the four main themes but not necessarily to each of the sub-themes.
Self, stigma and change All participants talked in some way about how they saw themselves before treatment, after treatment and the way they felt others perceived them. Overall HCV treatment and other treatment or changes were reported as having a positive impact on the individual despite the difficulties faced in accessing and completing the treatment. Three sub-themes were identified that are discussed in the following. Pre-existing view of self. Participants talked about their self-identity; for many, this was in relation to their former use of intravenous drugs although the nature and extent of this varied across participants: I was a really bad drug addict you know […] I was a bit of a hopeless case […] I was just so terrible, dirty. (Pam)
Some reported a sense of not fitting in, feeling strange or different to others: I were different to all the other kids because they were all happy-go-lucky and I’d got all these things going on in my head. (Dave)
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Ware et al. Table 2. The main themes and sub-themes capturing the experience of HCV treatment. 1. Self, stigma and change
2. Coping and responding to treatment 3. Connectedness to others
4. Feeling informed and ready
Pre-existing view of self – ‘I was a low life’ (Dave); ‘I was filthy’ (Pam) Stigma and fear of being judged – ‘It’s not really a sympathy inducing thing is it?’ (Helen) Changing view of self – ‘I’ll never get back to the old me’ (Nick); ‘I feel like a new woman’ (Helen) Understanding side effects – ‘If you can suss it out for what it is, you’ll be okay’ (Bob) Coping style, resilience and hope – ‘It was nothing that I couldn’t handle’ (Neil) Relationship with services – ‘I think they’ve pretty much got it taped’ (Bob) Support systems – ‘Don’t just treat the patient, treat the support network’ (Ann) ‘Forewarned is forearmed’ (Neil) ‘I should have been told’ (Ann) ‘Knowing it isn’t the same as being able to do it’ (Sue)
HCV: hepatitis C virus.
They even said to me, you’re not typical of any depressed patient, we don’t know what to do with you. (Ann)
Some participants also talked about how they perceived themselves in positive ways before having the HCV treatment: I’ve been through homelessness, I’ve been through no money, through bereavement […] I am a coper, I am a pragmatic problem solver, I’m not a stupid person. (Ann)
Stigma and fear of being judged. Many participants talked about stigma and a fear of being judged by other people because of their former drug use, the HCV infection and/or their previous or current mental health problems: People do not understand mental health issues, there’s still stigma, there’s still non-understanding. (Ann)
Two participants described being discriminated against by health professionals because of their IDU at the time: Staff in places dismiss it when you say you’re ill, because of the drug use. You know, as though
‘you’re bound to feel ill because you’re using drugs’, like that. (Pam)
Changing view of self. Participants spoke about having changed as a result of going through the HCV treatment, however, in many different ways. For Pam, there was a change in her sense of purpose: After I finished the treatment I felt a bit empty, a bit purposeless for a while. (Pam)
However, Ann felt she had changed in a negative way and after completing her (successful) treatment, she experienced a sudden change in mood and made a serious suicide attempt: ... it’s like somebody replaced me in my life […] before that (HCV treatment) I’d been a very bubbly, happy person […] I’ve gone. (Ann)
For many people, however, the experience of having HCV treatment was life-changing in a positive way: I’m beginning to actually see what the real me was like because I’ve never known the real me […] I’m enjoying experiencing life without other interferences like drugs, depression or anxiety …
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... what normal people experience everyday and take for the norm is quite unique for me really. (Dave)
Coping with and responding to treatment
and I’ve been taking this gear for so many years and nowt like this has happened […] so by deduction you put it down to the treatment. (Bob)
Conversely, participants who did not make the link with the HCV treatment reported confusion about the symptoms:
Participants talked about the ways in which they coped with and responded to the mental health side effects of the HCV treatment and two sub-themes were identified.
Somewhere during the night a bomb just went off inside me […] nowt seemed to make sense […] my mind fell out. (Nick)
Understanding side effects. The majority of participants made some link between the symptoms they were experiencing and the HCV treatment:
Coping style, resilience and hope. Most of the participants who encountered adverse side effects while on the HCV treatment showed a strong sense of determination and resilience:
I’m sure it were the treatment … […] that’s what I think what’s fetched it all to the forefront. (Nick)
I was actually so ill I was lying on the settee, could barely walk but I was going to the clinic every week […] I was determined right the way through to be extremely strong, go through it, deal with it […] I cracked on and on with the interferon. (Ann)
It [the treatment] seems to pick up on all weaknesses, problems, not re-intensified but bringing them to the foreground again. (Dave)
This even seemed to be the case with more unusual side effects such as hallucinations: I’d have wondered about that […] having like hallucinations and things, I could understand that that stuff [the treatment] affects your brain in some way and that’s why I’m feeling like this. (Helen)
There was a strong sense that being able to understand the cause of the symptoms helped people to manage them: … talking with (nurse’s name) at the hospital. It’s not that old problems have reared their head again, it’s the tablets, you’ve got to think it’s just the tablets. (Dave)
Some participants reported that previous experiences of drug use helped them understand and cope with the side effects: It weren’t all that disturbing because of previous experiences with LSD and speed and stuff like that […] You think about what you’ve took […]
All described ways in which they coped, some reporting a practical coping style (keeping occupied and busy) with others outlining more avoidant coping techniques (withdrawal, denial and minimisation). Knowing that the HCV treatment was time limited also appeared helpful. An aspect of coping that emerged from every transcript was the hope of a cure from the HCV infection. Even those for whom HCV treatment was unsuccessful in clearing the virus remained hopeful of a cure one day. Neil who had three unsuccessful periods of HCV treatment noted, The benefits far outweigh the little bit of illness […] I would have put up with practically anything, you know if the chances are I would have got a cure. (Neil)
Connectedness to others Although much of the experience of receiving HCV treatment was described as being internal
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Ware et al. or personal, that is, affecting the physical and mental health of the individual receiving it, participants also talked about the interpersonal or external effects of having treatment. For example, the effect their treatment had on those people around them and conversely the influence those people had on the patient’s experience of HCV treatment. Two sub-themes were identified. Relationship with services. Many participants indicated that they had received positive support from the HCV service. Although participants reported experiencing stigma in the past, no reports of stigma were associated to the HCV treatment team: I always knew that I’d got (professional’s name) to talk to if things got really bad, so that was a bit of a safety rope. (Dave) I think the support was fantastic but you had to ask for it. (Ann)
Some of the participants had received some psychological intervention prior to starting treatment. This was viewed very positively, specifically for help with motivation, understanding the cause of the symptoms, goal setting and being aware of the progress made already on treatment. Support systems. There was a sense among most of the participants that having the support of family and friends was important during the treatment. Furthermore, participants felt that the people within their support system should be as fully informed as they were about the physical and psychological side effects that could occur: Everyone around me was supportive and knew about my treatment in advance and my partner knew what to expect. (Neil) Your support network need to be told she could potentially do A, B, C or D, are you prepared to support her through this […] don’t just treat the patient, treat the support network. (Ann)
Feeling informed and ready Participants’ accounts revealed that the information they had been given about treatment (either prior to or during it) had an impact on their experience of it. Most participants described feeling prepared and ready for their HCV treatment through the information provided by the HCV clinic. Many of the participants felt that it was important to know about the positive and negative aspects of the treatment in order to feel prepared: They gave me every, every little bit of information they had […] and they gave me guidelines, you know […] they told me absolutely every single side effect which were a bit frightening at first […] they were very good, very thorough, you know. (Dave)
Some participants felt they had received only partial information about the treatment and suggested that the length of recovery time posttreatment and the potential seriousness of the side effects (including risk of suicide) could be discussed more fully beforehand. In contrast, one participant felt it was perhaps better not to know all the details: If they’d tell you this stuff at the beginning, you wouldn’t do it, you wouldn’t go on the treatment […] maybe that’s part of their technique, I don’t know (laughs). I think that’s the best way to approach it […] not tell anybody […] just let them go through it. (Bob)
Discussion Four themes emerged from this qualitative analysis of the experience of hepatitis C treatment for people with pre-existing mental health problems: ‘Self, stigma and change’, ‘Coping and responding to treatment’, ‘Connectedness to others’ and ‘Feeling informed and ready’. One of the strengths of the study is the emergence of the same themes across transcripts in spite of the disparate experiences and accounts of HCV
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treatment within the sample. The equal gender spilt in the sample stands in contrast to many of the published studies in this area where samples consisting of over 95 per cent males are not uncommon (Dieperink et al., 2003). However, it is important to recognise that self-report of treatment experience may have been subject to distortions of memory, particularly over longer time periods. Four of the participants had HCV treatment more than a year prior to the research, and for some treatment lasted a year. Therefore, the start and end of their treatment may be remembered differently. Biases may also be related to treatment outcome (successful or otherwise); however, some participants in this study for whom treatment was unsuccessful reported positive experiences of treatment and vice versa. The central theme of self, stigma and change has been suggested in other qualitative studies exploring the experiences of intravenous drug users (Larkin and Griffiths, 2002) and people with HCV (Glacken et al., 2001). It has been suggested that stigma associated with illness can be greater if the course of the illness is unpredictable and the cure rate is variable (Jones et al., 1984), both of which are present with HCV infection and treatment. Participants’ experience of discrimination from others is consistent with other studies of people with HCV (Golden et al., 2006; Zickmund et al., 2003), and within healthrelated literature (Link and Phelan, 2006). Mental health problems, specifically symptoms relating to depression and psychosis, were described as barriers to understanding side effects, and participants were left feeling unable to control them. Locus of control (Rotter, 1966), and an associated sense of selfefficacy in coping, may be important in understanding how patients make sense of their side effects and how they are able to employ effective coping styles and strategies. As psychosis and depression are often the reason for discontinuation of treatment, further exploration of locus of control in relation to HCV treatment may be important in relation to coping with
side effects and historical mental health symptoms in order to complete treatment. Existing models of illness that have been found to be helpful in physical health problems may be usefully applied to mental health problems (Lobban et al., 2003). For example, four of the five dimensions outlined in Leventhal et al.’s (1984) Self Regulation Model are reflected in the findings here. This model views individuals as active problem solvers whose coping strategies are guided by their interpretation and evaluation of their illness. However, there are limitations in applying this model to a treatment rather than an illness, and its ability to consider the impact of discrimination in addition to identity. In addition, it may be useful to explore the coping styles employed by participants undergoing hepatitis C treatment with particular consideration given to the personal and historical context in which the treatment is experienced. Hopwood and Treloar (2011) suggested that for some people, the experience of adversity and marginalisation can enhance resilience and that adaptive coping techniques learned from past experiences of adversity can be usefully applied during HCV treatment. The accounts within the current study are consistent with this suggestion. Research in post-traumatic growth may also be relevant – for example, how individuals are impacted upon by social support, attachment style and coping strategies (Schmidt et al., 2012). Finally, the hope of clearing the virus may have enabled people to cope with the unpleasant side effects and encouraged a resilient coping style to be adopted throughout treatment. Even participants who had experienced severe side effects while on treatment or whose treatment was unsuccessful said that they would endure the treatment again in the hope of a cure. The findings have relevance to clinical practice with HCV patients with pre-existing mental health problems. First, the person’s sense of self, their understanding of previous or current mental health problems, the coping strategies they use and their sense of hope might be assessed. Teams could use clinical psychology
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Ware et al. input to facilitate a formulation-driven, individual approach to promoting resilient coping through treatment. Second, providing accessible information about treatment and the potential side effects, descriptions of the risk of serious side effects and the expected time for recovery is important. Linked to this are overlaps between themes. For example, the better the ‘relationship with services’ (especially pretreatment with the HCV clinic staff), the more participants reported ‘understanding side effects’ and the more likely participants were to report ‘feeling informed and ready’. Third, working with individuals and those within their support systems could improve the process of recognising and managing side effects and seeking professional help when necessary. An individual relapse prevention plan (Birchwood, 1996), identifying what to do and who to contact if previously experienced symptoms reoccur during treatment, could assist with this. Fourth, support from professionals via telephone calls and drop-in clinics along with support groups or access to someone who has already received the treatment could be useful. Minimising participants’ experience of stigma and discrimination from service providers is key and this may be ensured by peer support, and professional support with good recruitment, training and supervision strategies. With an increase in referrals for treatment expected (Department of Health, 2004) as well as changes in guidelines about access to HCV treatment for people with pre-existing mental health problems in the United Kingdom (Royal College of General Practitioners, 2007), it is vital that services understand and ameliorate peoples’ experience of HCV treatment. Quality information, individual formulations, personalised care plans and relapse prevention strategies might help support patients through treatment and any side effects. Acknowledgements All participants gave informed consent prior to taking part in the study and consented for the sharing of data through publication of the findings.
Funding This research received no specific grant from any funding agency in the public, commercial, or not-forprofit sectors.
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threats. Baum A, Taylor SE and Singer JE (eds) A Handbook of Psychology and Health. Hillsdale, NJ: Erlbaum, 219–252. Link BG and Phelan JC (2006) Stigma and its public health implications. Lancet 367(9509): 528–529. Lobban F, Barrowclough C and Jones S (2003) A review of the role of illness models in severe mental illness. Clinical Psychology Review 23: 171–196. MacLean LM, Meyer M and Estable A (2004) Improving accuracy of transcripts in qualitative research. Qualitative Health Research 14: 113–123. Manns MP, McHutchinson JG, Gordon SC, et al. (2001) Peginterferon alfa-2b plus ribavirin compared with interferon-alpha-2b plus ribavirin for initial treatment of chronic hepatitis C: A randomised trial. Lancet 358: 958–965. National Institute for Health and Clinical Excellence (NICE) (2004) Interferon alfa (pegylated and non-pegylated) and ribavirin for the treatment of chronic hepatitis C. NICE technology appraisal guidance 75, January 2004. National Institute for Health and Clinical Excellence (NICE) (2006) Peginterferon alfa and ribavirin for the treatment of mild chronic hepatitis C. NICE technology appraisal guidance 106, August 2006. National Institute for Health and Clinical Excellence (NICE) (2010) Peginterferon alfa and ribavirin for the treatment of chronic hepatitis C (part review of NICE technology appraisal guidance 75 and 106). NICE technology appraisal guidance 200, September 2010. National Institute for Health and Clinical Excellence (NICE) (2012a) Boceprevir for the treatment of genotype 1 chronic hepatitis C. NICE technology appraisal guidance 253, April. London: NICE. National Institute for Health and Clinical Excellence (NICE) (2012b) Telaprevir for the treatment of genotype 1 chronic hepatitis C. NICE technology appraisal guidance 252, April. Available at: http://guidance.nice.org.uk/TA252/Guidance/ pdf/English National Institutes of Health (2002) National Institutes of Health Consensus Development Conference Statement: Management of hepatitis C: 2002 – June 10–12, 2002. Hepatology 36(5): 3–20. Poll R (2012a) Hepatitis C part 1: Detection and assessment. Practice Nursing 23(8): 396–400.
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HPQ0010.1177/1359105313506025Journal of Health PsychologyWare et al.
Article
The experience of hepatitis C treatment for people with a history of mental health problems: An interpretative phenomenological analysis
Journal of Health Psychology 2015, Vol. 20(7) 990–1001 © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1359105313506025 hpq.sagepub.com
K Ware1,2, J Davies2,3, G Rowse2 and S Whittaker1,2,4
Abstract This qualitative study explores the experience of hepatitis C virus treatment for people with pre-existing mental health problems within a large city hospital. Four men and four women with pre-existing mental health problems who had received hepatitis C virus treatment took part in semi-structured interviews which were analysed using interpretative phenomenological analysis. A central theme of ‘Self, stigma and change’ was identified which interlinked with three other main themes of ‘Coping and responding to treatment’, ‘Connectedness to others’ and ‘The impact of information’. These themes and their sub-themes are discussed in relation to existing literature and clinical practice guidelines.
Keywords hepatitis C, interferon, IPA, mental health, psychological impact of treatment
The Health Protection Agency (HPA) (2009) estimated that 185,000 individuals in the United Kingdom are chronically infected with the hepatitis C virus (HCV). In the United Kingdom, the most common route of HCV infection is through intravenous drug use (IDU) with the ‘Shooting Up’ report (HPA, 2011), suggesting that approximately 50 per cent of current or former intravenous drug users have HCV infection. Although a small minority of people may clear the virus themselves without treatment, over 70 per cent of people exposed to hepatitis C will develop a chronic infection requiring treatment (Hopwood and Treloar, 2005); of these, 5–10 per cent will develop cirrhosis of the liver after 20 years, and
3–5 per cent will develop liver cancer or liver failure within 50 years (Dore, 2001). 1Sheffield Health and Social Care Foundation NHS Foundation Trust, UK 2University of Sheffield, UK 3Abertawe Bro Morgannwg University Health Board, Cefn Coed Hospital, UK 4Looked After and Adopted Children’s Support & Therapeutic Team, Rotherham Metropolitan Borough Council, UK
Corresponding author: S Whittaker, Team manager, Clinical Psychologist, Looked After and Adopted Children’s Support & Therapeutic Team, Rotherham Metropolitan Borough Council, Psalters Centre, Kimberworth Rd, Rotherham S61 1HE, UK. Email: [email protected]
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Ware et al. Treatment for HCV has developed in recent years and in the United Kingdom, at the time of the research, guidelines recommended combination antiviral drug therapy with interferon-α (IFNα) and ribavirin (National Institute for Health and Clinical Excellence (NICE), 2004). Guidance updates (NICE, 2010, 2012a, 2012b) added a third medication to the regime, where indicated, to enhance effectiveness. However, around 80 per cent of patients with genotypes 1–3 will clear the virus (Manns et al., 2001; NICE, 2006, 2012a, 2012b; Poll, 2012a, 2012b). A number of physical and psychological side effects have been reported, ranging from mild depression, fatigue, irritability, lack of concentration and motivation to severe depression with suicidal ideation, mania and psychotic symptoms (Schaefer et al., 2002). The most documented psychological side effect of HCV treatment is depression (Zdilar et al., 2000) with reported rates ranging from 2 per cent to 41 per cent across studies (Crone and Gabriel, 2003). Although much less common, psychotic symptoms, mood instability and manic symptoms have been reported during HCV treatment (Fattovich et al., 1996; Iancu et al., 1997). Completed suicides have been reported (Janssen et al., 1994), with Sockalingam et al. (2011) suggesting that the first 12 weeks of IFNα therapy are a high-risk period for suicide. Many of the reported psychological side effects of treatment have been observed in patients without a prior history of mental health problems. Consequently, there have been concerns about the use of HCV treatment with people who have pre-existing mental health problems. Guidelines in the United Kingdom recommended that people with preexisting mental health problems should not receive HCV treatment (Booth et al., 2001; NICE, 2004). As a result, it has been estimated that up to half of all people eligible remain untreated due to pre-existing mental health or substance use problems (Schaefer et al., 2003). There is a growing body of literature suggesting that people with past or pre-existing
mental health problems can receive HCV treatment if their programme of care is prepared for and managed effectively (e.g. Chainuvati et al., 2006; Schaefer et al., 2003; Sylvestre et al., 2004). Countries including the United States (National Institutes of Health, 2002) and Australia (Hopwood and Southgate, 2003) have recognised that individuals with pre-existing mental health or substance use problems can be effectively treated for HCV. In the United Kingdom, guidelines recommend that although mental health problems should still be considered contraindications for treatment, individuals should receive HCV treatment if their mental health problem is monitored and managed carefully (Royal College of General Practitioners, 2007). A review of the literature revealed only two published qualitative studies investigating the experience of people going through the HCV treatment process – one investigating the overall experience of interferon treatment for hepatitis C (Hopwood and Treloar, 2005) and the other looking at the experience of fatigue in hepatitis C (Glacken et al., 2003). The current study aims to explore the experience of HCV treatment for people with pre-existing mental health problems using qualitative methods in order to compliment and enrich the existing HCV literature.
Methodology Design A qualitative approach was used to capture participants’ lived experience of having HCV treatment and how they interpreted and made sense of the side effects. A number of approaches to study design and data analysis were considered, namely, Discourse Analysis (Potter and Wetherell, 1987), Grounded Theory (Glaser and Strauss, 1967), Narrative Analysis (Clandinin and Connelly, 2000) and Interpretative Phenomenological Analysis (IPA) (Smith et al., 1999). From these, IPA was selected as the study purpose was to explore the meaning and
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interpretation of individual experience. IPA enables an in-depth, thorough and detailed exploration of participants’ thoughts about a topic allowing the researcher to take an insider’s perspective while taking into account their own constructs and beliefs. IPA is also widely used in health psychology and in areas of clinical research where there are unexplored areas of psychological interest and in answering questions about personal meanings (Smith et al., 1995). ‘IPA is concerned with trying to understand lived experience and with how participants themselves make sense of their experiences. Therefore, it is centrally concerned with the meanings which those experiences hold for the participants’ (IPA@BBK, n.d.). Individual interviews were conducted using a semi-structured schedule based on guidelines for IPA (Smith, 1995), consultation of existing literature and through discussion with research supervisors. Open questions provided an interview framework with flexibility for both researcher and participant to explore avenues that emerged. Questions included, ‘Could you tell me about the treatment for hepatitis C that you received?’ and ‘How did you make sense of the side effects at the time?’ The interview schedule can be obtained from the authors upon request. Ethical approval and research governance were gained from the relevant National Health Service (NHS) ethics committees and research and development departments where the research was conducted.
Participants People were considered for inclusion if they had a pre-existing mental health problem prior to having received HCV treatment in the past. People were excluded if health care professionals involved in their care considered them to be too unwell (physically or psychologically) to take part, or if they were unable to speak English fluently. Nine people met the criteria and agreed to an interview. Technical difficulties prevented one interview from being completed; therefore, eight participants are included for analysis.
Interviews took place over a 13-week period in 2007. Four women and four men participated in the study, and the characteristics of the participants are shown in Table 1. All participants were White, of British origin and aged 44–61 years. All participants had received HCV treatment within the preceding 6 years, four of whom had been treated in the previous year. Two of the participants were a married couple. In order to ensure anonymity, pseudonyms have been used throughout and identifying information removed.
Procedure People meeting the inclusion criteria were identified and given an information sheet by the Clinical Psychologist (S.W.) working in the hepatitis C service hosting the research. Individuals interested in taking part and who gave their permission were contacted by the first author (K.W.) to arrange an appointment to meet and conduct the interview. At the start of the interview, the information sheet was reviewed, participants were briefed about the interview process and consent forms were signed. Demographic information and details of their HCV treatment were collected using a standardised form. Individual, semi-structured interviews were carried out during which participants were invited to talk about their experiences of receiving HCV treatment, their previous mental health problems and any side effects they encountered. Participants were encouraged to share their experiences and talk about what was important to them. Prompts were used to elicit more details where necessary. At the end of the interview participants were offered a £10 high street voucher to acknowledge the time and effort involved in attending for interview. Six of the nine interviews were carried out on University premises, two were within NHS buildings and one took place in the participant’s home. The length of interviews varied from 50 to 80 minutes. Interviews were audiotaped and field notes were made after each interview.
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Ware et al. Table 1. Demographic details of participants. Age
Route of transmission of HCV
Details of HCV treatment (and date)
Participant reported previous mental health problems
Participant reported side effects
Treatment outcome
Helen 46
IDU
6 months (2006– 2007)
Depression Anxiety Possible psychosis
Depression
Neil
44
IDU, blood transfusion or sexual intercourse
3 × periods of Drug addiction 6-month treatment, Depression stopped due to side effects/no effect (1997, 2002 and 2006)
Finishing treatment at time of interview and awaiting results Unsuccessful so far
Pam
52
6 months (2005)
Depression
Dave
46
IDU or tattoos IDU
6 months (2006)
Anxiety Paranoia Depression Hallucinations
Anxiety Depression
Finished treatment but awaiting results at time of interview
Bob Sue
61
IDU
6 months (2006)
Hallucinations
Successful
53
IDU
Bipolar Disorder with psychotic symptoms
46
IDU
44
IDU or transmitted from close family member
6 months but stopped early due to side effects (2001) 6 months but stopped early due to side effects (2003) 6 months (2004)
Depression Hallucinations Psychotic symptoms (inc. hallucinations) Hallucinations Homicidal thoughts
Nick Ann
Psychotic symptoms (inc. hallucinations) – unsure if caused by HCV treatment None Successful
Paranoia Anger and aggression Homicidal thoughts Depression Depression Suicide attempt following treatment
Unsuccessful
Unsuccessful but due to start again soon Successful
HCV: hepatitis C virus; IDU: intravenous drug use.
Data analysis Interview transcripts were analysed using the IPA guidelines from Smith et al. (1999). Interviews were transcribed verbatim by a professional audio-typist who was provided with
guidance to improve accuracy (MacLean et al., 2004). Standardised instructions and a confidentiality agreement were used for this (University of Sheffield, 2008 – available by request from the authors). Transcripts were verified for accuracy by the first author (K.W.)
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and comments relating to intonation or emotion inserted. Transcripts were read several times and preliminary notes, thoughts, observations and early interpretations were recorded in the left margin. Reflections and emerging themes were then recorded in the right margin. These themes were transcribed to separate pieces of coloured paper (one colour per participant) with location detail (i.e. transcript name, page and line). Themes were reviewed first at the participant level and then as a whole, with regular reference to the transcripts to consider emerging themes. Notes were also made in a research journal to record emerging ideas, decision making and other observations. Themes were then reviewed for clusters and links and the transcripts were reread, to establish confirming and disconfirming examples of themes and the overall credibility and fit of the final representation. Reflexivity was supported in a number of ways. A reflexive diary was kept throughout the process of data collection and analysis (Yardley, 2000), which provided a clear ‘audit trail’ enabling each stage of the research process to be discussed and decision making to be reviewed (Elliott et al., 1999). One of the collaborators audited one of the transcripts to check that initial themes and ideas were grounded in the data and to ensure that the process of deriving the themes was evidenced. The research team also checked that each of the final themes could be directly and clearly linked to individual participant data. Finally, the association of the researcher with the Clinical Psychologist in the HCV team and the £10 high street voucher reimbursement were considered as possible influences on participant responses, although no evidence of influence was noted.
Characteristics of the lead researcher The first author (K.W.) was a White 30-year-old female without hepatitis C, undertaking the research as part of her training in Clinical Psychology. She had little experience of working
with people with hepatitis C or substance use problems but had clinical experience of conducting sensitive interviews and of working with people with severe mental health problems. She also had an interest in how people make sense of and recover from mental health problems such as psychosis.
Results Four overlapping themes emerged from the participants’ accounts with ‘Self, stigma and change’ holding a central position between, and interlinking with, each of the other themes. The main themes together with each of the subthemes and illustrating quotes are provided in Table 2. All the participants contributed to each of the four main themes but not necessarily to each of the sub-themes.
Self, stigma and change All participants talked in some way about how they saw themselves before treatment, after treatment and the way they felt others perceived them. Overall HCV treatment and other treatment or changes were reported as having a positive impact on the individual despite the difficulties faced in accessing and completing the treatment. Three sub-themes were identified that are discussed in the following. Pre-existing view of self. Participants talked about their self-identity; for many, this was in relation to their former use of intravenous drugs although the nature and extent of this varied across participants: I was a really bad drug addict you know […] I was a bit of a hopeless case […] I was just so terrible, dirty. (Pam)
Some reported a sense of not fitting in, feeling strange or different to others: I were different to all the other kids because they were all happy-go-lucky and I’d got all these things going on in my head. (Dave)
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Ware et al. Table 2. The main themes and sub-themes capturing the experience of HCV treatment. 1. Self, stigma and change
2. Coping and responding to treatment 3. Connectedness to others
4. Feeling informed and ready
Pre-existing view of self – ‘I was a low life’ (Dave); ‘I was filthy’ (Pam) Stigma and fear of being judged – ‘It’s not really a sympathy inducing thing is it?’ (Helen) Changing view of self – ‘I’ll never get back to the old me’ (Nick); ‘I feel like a new woman’ (Helen) Understanding side effects – ‘If you can suss it out for what it is, you’ll be okay’ (Bob) Coping style, resilience and hope – ‘It was nothing that I couldn’t handle’ (Neil) Relationship with services – ‘I think they’ve pretty much got it taped’ (Bob) Support systems – ‘Don’t just treat the patient, treat the support network’ (Ann) ‘Forewarned is forearmed’ (Neil) ‘I should have been told’ (Ann) ‘Knowing it isn’t the same as being able to do it’ (Sue)
HCV: hepatitis C virus.
They even said to me, you’re not typical of any depressed patient, we don’t know what to do with you. (Ann)
Some participants also talked about how they perceived themselves in positive ways before having the HCV treatment: I’ve been through homelessness, I’ve been through no money, through bereavement […] I am a coper, I am a pragmatic problem solver, I’m not a stupid person. (Ann)
Stigma and fear of being judged. Many participants talked about stigma and a fear of being judged by other people because of their former drug use, the HCV infection and/or their previous or current mental health problems: People do not understand mental health issues, there’s still stigma, there’s still non-understanding. (Ann)
Two participants described being discriminated against by health professionals because of their IDU at the time: Staff in places dismiss it when you say you’re ill, because of the drug use. You know, as though
‘you’re bound to feel ill because you’re using drugs’, like that. (Pam)
Changing view of self. Participants spoke about having changed as a result of going through the HCV treatment, however, in many different ways. For Pam, there was a change in her sense of purpose: After I finished the treatment I felt a bit empty, a bit purposeless for a while. (Pam)
However, Ann felt she had changed in a negative way and after completing her (successful) treatment, she experienced a sudden change in mood and made a serious suicide attempt: ... it’s like somebody replaced me in my life […] before that (HCV treatment) I’d been a very bubbly, happy person […] I’ve gone. (Ann)
For many people, however, the experience of having HCV treatment was life-changing in a positive way: I’m beginning to actually see what the real me was like because I’ve never known the real me […] I’m enjoying experiencing life without other interferences like drugs, depression or anxiety …
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... what normal people experience everyday and take for the norm is quite unique for me really. (Dave)
Coping with and responding to treatment
and I’ve been taking this gear for so many years and nowt like this has happened […] so by deduction you put it down to the treatment. (Bob)
Conversely, participants who did not make the link with the HCV treatment reported confusion about the symptoms:
Participants talked about the ways in which they coped with and responded to the mental health side effects of the HCV treatment and two sub-themes were identified.
Somewhere during the night a bomb just went off inside me […] nowt seemed to make sense […] my mind fell out. (Nick)
Understanding side effects. The majority of participants made some link between the symptoms they were experiencing and the HCV treatment:
Coping style, resilience and hope. Most of the participants who encountered adverse side effects while on the HCV treatment showed a strong sense of determination and resilience:
I’m sure it were the treatment … […] that’s what I think what’s fetched it all to the forefront. (Nick)
I was actually so ill I was lying on the settee, could barely walk but I was going to the clinic every week […] I was determined right the way through to be extremely strong, go through it, deal with it […] I cracked on and on with the interferon. (Ann)
It [the treatment] seems to pick up on all weaknesses, problems, not re-intensified but bringing them to the foreground again. (Dave)
This even seemed to be the case with more unusual side effects such as hallucinations: I’d have wondered about that […] having like hallucinations and things, I could understand that that stuff [the treatment] affects your brain in some way and that’s why I’m feeling like this. (Helen)
There was a strong sense that being able to understand the cause of the symptoms helped people to manage them: … talking with (nurse’s name) at the hospital. It’s not that old problems have reared their head again, it’s the tablets, you’ve got to think it’s just the tablets. (Dave)
Some participants reported that previous experiences of drug use helped them understand and cope with the side effects: It weren’t all that disturbing because of previous experiences with LSD and speed and stuff like that […] You think about what you’ve took […]
All described ways in which they coped, some reporting a practical coping style (keeping occupied and busy) with others outlining more avoidant coping techniques (withdrawal, denial and minimisation). Knowing that the HCV treatment was time limited also appeared helpful. An aspect of coping that emerged from every transcript was the hope of a cure from the HCV infection. Even those for whom HCV treatment was unsuccessful in clearing the virus remained hopeful of a cure one day. Neil who had three unsuccessful periods of HCV treatment noted, The benefits far outweigh the little bit of illness […] I would have put up with practically anything, you know if the chances are I would have got a cure. (Neil)
Connectedness to others Although much of the experience of receiving HCV treatment was described as being internal
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Ware et al. or personal, that is, affecting the physical and mental health of the individual receiving it, participants also talked about the interpersonal or external effects of having treatment. For example, the effect their treatment had on those people around them and conversely the influence those people had on the patient’s experience of HCV treatment. Two sub-themes were identified. Relationship with services. Many participants indicated that they had received positive support from the HCV service. Although participants reported experiencing stigma in the past, no reports of stigma were associated to the HCV treatment team: I always knew that I’d got (professional’s name) to talk to if things got really bad, so that was a bit of a safety rope. (Dave) I think the support was fantastic but you had to ask for it. (Ann)
Some of the participants had received some psychological intervention prior to starting treatment. This was viewed very positively, specifically for help with motivation, understanding the cause of the symptoms, goal setting and being aware of the progress made already on treatment. Support systems. There was a sense among most of the participants that having the support of family and friends was important during the treatment. Furthermore, participants felt that the people within their support system should be as fully informed as they were about the physical and psychological side effects that could occur: Everyone around me was supportive and knew about my treatment in advance and my partner knew what to expect. (Neil) Your support network need to be told she could potentially do A, B, C or D, are you prepared to support her through this […] don’t just treat the patient, treat the support network. (Ann)
Feeling informed and ready Participants’ accounts revealed that the information they had been given about treatment (either prior to or during it) had an impact on their experience of it. Most participants described feeling prepared and ready for their HCV treatment through the information provided by the HCV clinic. Many of the participants felt that it was important to know about the positive and negative aspects of the treatment in order to feel prepared: They gave me every, every little bit of information they had […] and they gave me guidelines, you know […] they told me absolutely every single side effect which were a bit frightening at first […] they were very good, very thorough, you know. (Dave)
Some participants felt they had received only partial information about the treatment and suggested that the length of recovery time posttreatment and the potential seriousness of the side effects (including risk of suicide) could be discussed more fully beforehand. In contrast, one participant felt it was perhaps better not to know all the details: If they’d tell you this stuff at the beginning, you wouldn’t do it, you wouldn’t go on the treatment […] maybe that’s part of their technique, I don’t know (laughs). I think that’s the best way to approach it […] not tell anybody […] just let them go through it. (Bob)
Discussion Four themes emerged from this qualitative analysis of the experience of hepatitis C treatment for people with pre-existing mental health problems: ‘Self, stigma and change’, ‘Coping and responding to treatment’, ‘Connectedness to others’ and ‘Feeling informed and ready’. One of the strengths of the study is the emergence of the same themes across transcripts in spite of the disparate experiences and accounts of HCV
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treatment within the sample. The equal gender spilt in the sample stands in contrast to many of the published studies in this area where samples consisting of over 95 per cent males are not uncommon (Dieperink et al., 2003). However, it is important to recognise that self-report of treatment experience may have been subject to distortions of memory, particularly over longer time periods. Four of the participants had HCV treatment more than a year prior to the research, and for some treatment lasted a year. Therefore, the start and end of their treatment may be remembered differently. Biases may also be related to treatment outcome (successful or otherwise); however, some participants in this study for whom treatment was unsuccessful reported positive experiences of treatment and vice versa. The central theme of self, stigma and change has been suggested in other qualitative studies exploring the experiences of intravenous drug users (Larkin and Griffiths, 2002) and people with HCV (Glacken et al., 2001). It has been suggested that stigma associated with illness can be greater if the course of the illness is unpredictable and the cure rate is variable (Jones et al., 1984), both of which are present with HCV infection and treatment. Participants’ experience of discrimination from others is consistent with other studies of people with HCV (Golden et al., 2006; Zickmund et al., 2003), and within healthrelated literature (Link and Phelan, 2006). Mental health problems, specifically symptoms relating to depression and psychosis, were described as barriers to understanding side effects, and participants were left feeling unable to control them. Locus of control (Rotter, 1966), and an associated sense of selfefficacy in coping, may be important in understanding how patients make sense of their side effects and how they are able to employ effective coping styles and strategies. As psychosis and depression are often the reason for discontinuation of treatment, further exploration of locus of control in relation to HCV treatment may be important in relation to coping with
side effects and historical mental health symptoms in order to complete treatment. Existing models of illness that have been found to be helpful in physical health problems may be usefully applied to mental health problems (Lobban et al., 2003). For example, four of the five dimensions outlined in Leventhal et al.’s (1984) Self Regulation Model are reflected in the findings here. This model views individuals as active problem solvers whose coping strategies are guided by their interpretation and evaluation of their illness. However, there are limitations in applying this model to a treatment rather than an illness, and its ability to consider the impact of discrimination in addition to identity. In addition, it may be useful to explore the coping styles employed by participants undergoing hepatitis C treatment with particular consideration given to the personal and historical context in which the treatment is experienced. Hopwood and Treloar (2011) suggested that for some people, the experience of adversity and marginalisation can enhance resilience and that adaptive coping techniques learned from past experiences of adversity can be usefully applied during HCV treatment. The accounts within the current study are consistent with this suggestion. Research in post-traumatic growth may also be relevant – for example, how individuals are impacted upon by social support, attachment style and coping strategies (Schmidt et al., 2012). Finally, the hope of clearing the virus may have enabled people to cope with the unpleasant side effects and encouraged a resilient coping style to be adopted throughout treatment. Even participants who had experienced severe side effects while on treatment or whose treatment was unsuccessful said that they would endure the treatment again in the hope of a cure. The findings have relevance to clinical practice with HCV patients with pre-existing mental health problems. First, the person’s sense of self, their understanding of previous or current mental health problems, the coping strategies they use and their sense of hope might be assessed. Teams could use clinical psychology
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Ware et al. input to facilitate a formulation-driven, individual approach to promoting resilient coping through treatment. Second, providing accessible information about treatment and the potential side effects, descriptions of the risk of serious side effects and the expected time for recovery is important. Linked to this are overlaps between themes. For example, the better the ‘relationship with services’ (especially pretreatment with the HCV clinic staff), the more participants reported ‘understanding side effects’ and the more likely participants were to report ‘feeling informed and ready’. Third, working with individuals and those within their support systems could improve the process of recognising and managing side effects and seeking professional help when necessary. An individual relapse prevention plan (Birchwood, 1996), identifying what to do and who to contact if previously experienced symptoms reoccur during treatment, could assist with this. Fourth, support from professionals via telephone calls and drop-in clinics along with support groups or access to someone who has already received the treatment could be useful. Minimising participants’ experience of stigma and discrimination from service providers is key and this may be ensured by peer support, and professional support with good recruitment, training and supervision strategies. With an increase in referrals for treatment expected (Department of Health, 2004) as well as changes in guidelines about access to HCV treatment for people with pre-existing mental health problems in the United Kingdom (Royal College of General Practitioners, 2007), it is vital that services understand and ameliorate peoples’ experience of HCV treatment. Quality information, individual formulations, personalised care plans and relapse prevention strategies might help support patients through treatment and any side effects. Acknowledgements All participants gave informed consent prior to taking part in the study and consented for the sharing of data through publication of the findings.
Funding This research received no specific grant from any funding agency in the public, commercial, or not-forprofit sectors.
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