Fifteen homeless men and two homeless women were interviewed. All were Caucasian and from the UK, except for one southern European. Although this reflected the ethnicity profile of single homeless people attending the health centre, women were slightly under-represented among responders. The study participants ranged in age from 22 to 49 years with injecting drug histories ranging from 6 months to 20 years. A few had histories of chronic repeated homelessness, although they were currently sustaining their own tenancies; most, however, were either living in hostels, or bed and breakfast accommodation, staying with friends, or sleeping rough. Two responders were staying in institutions with no planned accommodation upon release/discharge. All had received a positive antibody test for hepatitis C virus, and five of them had had a polymerase chain reaction (PCR) confirmation at the time of interview. Three patients had had a liver biopsy; two were awaiting biopsy appointments. The time since diagnosis (which we took to be the first antibody test) ranged from 1 week to over 10 years.
Testing, diagnosis, and response
Tests for hepatitis C took place in primary care or in hospital. Although some responders sought testing, others were unaware that blood had been taken for hepatitis C virus serology while they were in hospital. This was a recurrent theme and raised important issues about pre-test discussions and patient choice. Most received the diagnosis from a doctor in primary care or by staff in hospital, but one received it from an ambulance worker and another from a family member via a doctor. The way in which the diagnosis was given concerned some participants, as this hostel resident expressed:
‘The doctor came in and he said, “Oh I've got your results here and I'm sorry to say that you've got hepatitis C” and left.’ (Responder 2.)
A 48-year-old, who did not seek hepatitis C testing, commented:
‘I was just stunned, I thought, you are telling me I've got hepatitis C and you just say it like you were saying hello to me and he just walked away.’ (Responder 3.)
Receiving a diagnosis of hepatitis C led participants to question how they had contracted the infection. Participants believed that injecting drug use, particularly the sharing of injecting paraphernalia items such as spoons (rather than needles and syringes) was responsible for hepatitis C positivity. Knowing the occasion and from whom it was contracted was not unusual as, despite disclosing risk behaviours, responders described something different about that particular injecting incident from their normal practices.
‘I got the hepatitis C injecting amphetamine and I know how, I even know the person you know, everything, because it's so starkly stuck in my head because it was once.’ (Responder 1.)
Others believed their hepatitis C was either contracted through unprotected sex, sharing a personal toiletry item, or being tattooed in prison with a needle that had been commonly used for injecting. Even those who could not specify how they contracted the virus felt the need to do so as it appeared to ‘make sense’ of the diagnosis.
Receiving the positive diagnosis had a significant emotional impact on all of the study participants. Initial responses included feelings of disorientation, shock, devastation, disbelief, and anger, as illustrated by this man:
‘I couldn't believe it, you know my head was in a jumble and for about a week after. I didn't talk to the nurses or that. I didn't want any visitors or anything. I was just sat in the corner of my room.’ (Responder 2.)
Using drugs at the time of diagnosis meant some reactions were muted, but not for all current users. Blame was a common reaction, either directed at themselves or towards those they felt to be responsible. Some responses involved anger and violent outbursts towards people or property. The hepatitis C diagnosis also led to responders' fear of premature death, from imminent death, to ideas that they had 5 or 15 years left to live. Strong language expressed these feelings and the diagnosis was occasionally likened to receiving a ‘death sentence/warrant’ or a ‘curse.’ One responder described this:
‘I thought I was a goner, I thought I was going to die, you know what I mean? I thought this disease was going to get a grip of me and make me die an awful death.’ (Responder 7.)
These beliefs had different responses. Some felt that they would make the most of the time they had left, while others were more fatalistic — one participant contemplated suicide. Other negative feelings raised by the diagnosis were directed against themselves, including self-disgust, shame, regret, and annoyance. This meant that many didn't want to talk about it. Others, however, described feelings of acceptance and re-adjustment:
‘At first I was devastated but to be honest with you I think I've just come to terms with it, you know what I mean? We've all got to die anyway.’ (Responder 4.)
A current injector said:
‘I don't have no emotions to it anymore, it doesn't upset me, I don't get wound up about it or anything like that, what's done is done, I can't change it now, can I?’ (Responder 7.)
Other responders remained anxious about having hepatitis C, particularly during times of minor illness:
‘I've got a bad stomach ache and I'm going to the toilet all the time and I'm thinking, “well is this the hep C starting you know, to kick in, so to speak” and then you end up better the next couple of days so you put it down that it isn't.’ (Responder 4.)
Psychosocial impact and knowledge
There was a psychological impact associated with having a positive hepatitis C status, even for those responders who said that they were ‘not bothered’ about having it. People described how much they thought about it, with one participant (responder 9) commenting that, ‘There's not a minute that goes by that I don't think about it and regret it’.
There was overlap between the psychological and social impact of the diagnosis. People described being more concerned for others, especially for their children and partners, than for themselves. One man stated:
‘It don't bother me so much, it bothers me about my girlfriend’. (Responder 12.)
Disclosure also evoked mixed responses. Many participants thought it was ‘morally right’ or they felt ‘obliged’ to tell others about their diagnosis. This included family, friends, partners, other injectors, hostel workers, dentists, support groups, and housemates. However, participants were often anxious about telling others, as reactions were unpredictable. Some negative reactions included disbelief, being upset and denial from families or from other injectors, which made some responders hide their diagnosis. Fears about others' reactions and whether their family or friends would still associate with them resulted in some concealing their hepatitis C status. A 26-year-old expressed this fear:
‘I'm having to lie to people all the time, you know what I mean and stuff like that. Even me own family, I can't tell them.’ (Responder 9.)
Another responder described telling people about the diagnosis:
‘I thought it was only right they should know but I only did that about twice and then it got around town.’ (Responder 17.)
Others' ignorance about hepatitis C was given as a reason for not disclosing or talking about it. This ignorance accounted for the stigma associated with having hepatitis C and people described how other injectors likened it to HIV or AIDS:
‘A lot of people think it's like AIDS or something like that. They think it's really bad, keep away from thing, you know, yeah a lot of people, just because people don't know about it, they treat it like AIDS or something.’ (Responder 3.)
Another negative effect was the impact on social life as highlighted by this responder:
‘Before I found out I caught it I used to have a laugh with people and that, you know what I mean? But now, I just don't and like I spend most of me time on me own. I don't go out socialising, I've stopped socialising with people.’ (Responder 16.)
There was also an impact on relationships. Where people had told their partners, it appeared that they acted supportively. However, those not in relationships raised doubts about telling future partners. Male participants felt that hepatitis C reduced or stopped their chances of having heterosexual relationships, as expressed by this man:
‘It stops me going out and getting a girlfriend and stuff like that. It bothers me in ways like that, having hepatitis C.’ (Responder 5.)
There were also real fears about having children for some male participants:
‘If they wanted to have kids or stuff, I'd be stuffed won't I cos I mean, how am I going to talk my way out of that one?’ (Responder 9.)
‘It depresses me now. It sort of puts the lid on having a family now and that's the bad, the bad depressive side of it, I can't sort of make my own family now.’ (Responder 16.)
People mentioned encountering negative experiences from other injectors and the wider community as a result of having hepatitis C. Many professionals, including hospital staff, dentists, and the police treated them negatively. One responder described how their computerised police file flashed a warning when accessed and that officers wore rubber gloves around them. Others described how people thought they should use separate eating utensils and showers. Such responses, especially from professionals, resulted in participants feeling angry and ‘contagious’. One responder described their hospital experience:
‘They [hospital staff] said use the commode, they didn't say why and then I said, “is it cos I've got hep C?” and they said yeah.’ (Responder 17.)
A 46-year-old spoke of their experience at the dentist:
‘He [dentist] claimed to not have the sterilising equipment that would be required in order to treat me and that he'd have to refer me to a specialist.’ (Responder 11.)
Participants believed that such stigma resulted from the association of the hepatitis C virus with injecting drug use. The same 46-year-old (responder 11) stated:
‘He [the dentist] automatically expects you to have had a needle stuck in your arm.’
Although a range of possible symptoms were described, there was no uniform experience of symptoms attributed to hepatitis C. Differing levels of hepatitis C-related knowledge were identified. Even those who had been diagnosed a number of years before had important gaps in their knowledge:
‘It can affect your kidneys, erm, am I right in saying that? Actually I'm not even sure now. It can either affect your kidneys or your liver.’ (Responder 3.)
In general however, a positive hepatitis C diagnosis led to improved knowledge.
People showed better knowledge about the transmission risks, but were confused about whether hepatitis C could be sexually transmitted. Additionally, although some had heard about treatment, others were uncertain if hepatitis C could be prevented or treated:
‘I don't know if there's a cure for it. I don't know if there's a drug to prevent you getting it like there is with hepatitis B.’ (Responder 7.)
Current epidemiological evidence that some can clear the hepatitis C virus may not have been fully explained to some participants and was also a source of confusion:
‘I was so much under the impression that I got it, I had it and I kept it and I know a lot of people are like that.’ (Responder 1.)
In general, participants welcomed more information to help overcome their confusion.