Impact of a positive hepatitis C
diagnosis on homeless injecting drug users: a qualitative study
NE Tompkins, BA(Hons), PDG, Research Assistant, Nat MJ
Wright, DRCOG, FRCGP, GP Consultant in Substance Misuse and
Homelessness, and Lesley Jones, BA, MSc, Med Sci PhD,
Senior Research Fellow
Research in Primary Care, Leeds
Charlotte NE Tompkins, Centre for Research in Primary Care,
71–75 Clarendon Road, Leeds LS2 9PL. E-mail:
Increasing numbers of injecting drug users
are presenting to primary care and a growing number of general
practices are specifically providing care for homeless people.
Injecting drug users are at the greatest risk of hepatitis C
infection and homeless drug misusers, because of their
drug-taking behaviour and patterns, have been identified as
being at greater risk of harm of blood-borne diseases than the
general population. However, little work has been conducted with
injecting drug users or homeless people who have hepatitis C and
little is known about how the virus may affect them.
To explore the impact of a positive
hepatitis C diagnosis on homeless injecting drug users.
Design of study
This study employed qualitative research.
In-depth interviews allowed the exploration of the impact of a
potentially life-threatening diagnosis within the context of a
person's expressed hierarchy of needs.
A primary care centre for homeless people
in the north of England.
In-depth interviews about the impact of a
positive hepatitis C diagnosis on their lives were conducted
with 17 homeless injecting drug users who had received a
positive hepatitis C diagnosis. The interviews were audiotaped,
transcribed, and analysed using the framework approach.
Receiving a positive diagnosis for
hepatitis C resulted in feelings of shock, devastation,
disbelief, anger, and questioning. A positive diagnosis had
lasting social, emotional, psychological, behavioural, and
physical effects on homeless injecting drug users, even years
after the initial diagnosis. Most responders were diagnosed by a
doctor in primary care or by hospital staff; however, not all
had sought testing and a number were tested while inpatients and
were unaware that blood had been taken for hepatitis C virus
The implications for clinical policy and
primary care practice are discussed, including the issues of
patient choice, confidentiality, and pre- and post-test
discussions. Post-test discussions should be followed up with
additional social, psychological, and medical support and
hepatitis C, homeless persons, intravenous drug abuse, primary
care, qualitative research
Intravenous drug use is the main mode of
transmission of the hepatitis C virus1,2
and an estimated 50–80% of injecting drug users in the UK are
In the UK, homelessness remains a common social problem4
and general practice has become more engaged with working with
this marginalised client group. This is due to GPs developing a
special clinical interest in substance misuse.5
Also, there has been a steady increase in the number of general
practices working specifically with homeless people as a result
of personal medical services (PMS) schemes.6
Homeless people and drug misusers have been identified as being
at greater risk of infection with blood-borne viruses than the
Although injecting drug use is the main expressed health need of
UK homeless populations,6,8,9
few studies have explored the psychosocial effects of a
laboratory-confirmed positive hepatitis C virus diagnosis.
Although some qualitative work has been conducted with people
with a positive hepatitis C diagnosis, the study population10-13
was not specific to homeless people or injecting drug users.
Therefore, it is questionable how transferable the findings are
to this homeless/drug-injecting population,14
who are not thought to prioritise their health needs.10-13
Our study explored the impact of a diagnosis of a chronic
illness with high morbidity and mortality among a population who
prioritise financial, addiction, and housing needs above health
issues. The originality of our research comes, therefore, from
using qualitative methods to focus on this group to examine
their responses to receiving a potentially life-threatening
diagnosis within the context of a person's expressed hierarchy
How this fits in
Injecting drugs is the main mode of transmission of the
hepatitis C virus and an estimated 50–80% of injecting drug
users in the UK are infected. Little work however, has explored
what a positive diagnosis of hepatitis C means to them and how
it might affect them. This qualitative research identified
strong emotional responses to being diagnosed with hepatitis C.
A positive diagnosis has potentially devastating and lasting
social, emotional, and psychological effects on homeless
injecting drug users. Improved pre-and post-test discussions in
the primary care consultation for homeless drug misusers
diagnosed as positive for hepatitis C are needed
This study was conducted at a UK inner-city
primary care centre for homeless people. The multidisciplinary
team carries out over 10 000 consultations a year, with most
consultations being related to illicit drug use. A search of
computerised records identified 71 registered patients (56 men
and 15 women) who had received a positive antibody test for
hepatitis C. Letters explaining the study and inviting
participation were distributed at clinic or outreach
appointments. These included a pre-interview request for current
accommodation and contact details and information on the length
of time injecting drugs. Posters in the health centre also
advertised the research. The sample was then purposively
selected to ensure diversity across primary variables, including
current accommodation, time since diagnosis, and injecting drug
use history. Age and sex were monitored as secondary variables.
Interested patients were introduced to the researcher and a
convenient interview time was arranged.
A topic guide was used in in-depth
interviews, which explored homeless injecting drug users'
attitudes to, and experiences of, hepatitis C. The key themes
included injecting drug use, receiving the positive diagnosis,
and its impact on behaviour and lifestyle. After seeking ethical
approval, confidentiality and the right to withdraw without
affecting their care was explained and written consent was
obtained from each participant. A non-clinical researcher
interviewed 17 homeless injecting drug users with a hepatitis
The interviews lasted from 30 to 90 minutes
and were audiotaped and transcribed. A £10 supermarket voucher
was given to each participant on completion of the interview.
The interviews took place over a 12-month period and were
conducted in private at the health centre, in a custodial
institution, and on a hospital ward.
The transcripts were analysed using the categories that emerged
from the interviews. The primary researcher analysed the
interview data manually. The other authors also independently
identified key themes from the transcripts and the team had
fortnightly discussions to facilitate the analysis and
interpretation. A framework approach provided a structure to
allow detailed analysis of the emerging themes and concepts.15
This involved coding each transcript to identify important
categories. These categories were revised and condensed and then
formed a framework chart for individual responders. All
interview responses were entered on the chart. This chart
provided a framework for analysis of peoples' accounts, which
included the range and diversity of responses. The quotations
presented in the results reflect the diversity of responses from
participants. In order to protect anonymity, the responders were
each given a unique number, which is presented at the end of
their quoted speech in place of their names
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
‘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
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.’
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
‘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
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.’
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.’
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
‘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.’
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
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
‘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
‘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.)
general, participants welcomed more information to help overcome
Summary of the main findings
Homeless injecting drug users had strong
emotional responses to testing positive for hepatitis C. These
responses were akin to bereavement reactions and to receiving
positive HIV test results.16
The way that a positive hepatitis C diagnosis impacted on
homeless injecting drug users is an important finding,
especially for primary care. In particular, the effect of the
diagnosis on homeless injecting drug users challenges many
negative assumptions regarding the value that these patients
place on their health.
Long-term psychosocial effects of the
diagnosis included depression and anxiety about sexual
relationships and having children. Many felt stigmatised by the
diagnosis and were, therefore, often reluctant to disclose it.
This threatens the potential for hepatitis C-related support.
Our research identified that some homeless injecting drug users
were tested for hepatitis C without giving informed consent or
without any pre-test discussion. This was worrying, especially
considering the importance of obtaining patient consent and
conducting pre-test discussions.17-18
Although knowledge generally improved after the diagnosis, some
still had limited knowledge about the virus.
Strengths and limitations of the study
As one of the first qualitative studies
based solely on homeless injecting drug users with hepatitis C,
we accessed a marginalised and hard-to-reach sub-population of
injectors. We identified that homeless drug users with hepatitis
C have concerns about the virus. This may challenge a number of
commonly held stereotypes about homeless drug users and their
perceived hierarchy of needs. In particular, it is often assumed
that homeless people place a low value on their health. However,
homeless injecting drug users expressed real concerns in
relation to their quality of life and their future health status
as a direct result of the positive hepatitis C diagnosis.
Although it could be argued that such responses were given to
please the interviewer, this is unlikely as the same
participants described engaging in high-risk injection practices
and also acknowledged sharing items of injecting paraphernalia.
Gaining trust, assuring confidentiality and talking in an open
and non-judgmental manner was instrumental at putting
participants at ease and allowed them to talk freely.
The limitations of the study were that female injecting drug
users with hepatitis C and homeless drug users from ethnic
minorities were under-represented. This could be addressed in
future by sampling from multiple centres
Implications for clinical practice and future research
Our research raised implications for future
practice. It highlighted the importance of training generic
hospital staff in pre-test discussions and informed consent
prior to offering serological testing for hepatitis C virus.
This may avoid some of the strong emotional responses to the
For those made aware of their diagnosis in
hospital without any pre- or post-test discussion, there is a
counselling role for primary care practitioners. There is also a
need for improved post-test discussions, and sensitive testing
could minimise some of the potentially devastating affects of
the diagnosis among homeless injecting drug users. This research
has also highlighted a need for ongoing support and counselling
beyond initial post-test discussion. It is appropriate that much
of this takes place in primary care consultations.
Setting up local and national support
groups for injecting drug users with hepatitis C also warrants
further investigation. Information, support, and counselling
should also be more readily available for close friends, family
members, and other injecting drug users as their increased
understanding may lessen discriminatory attitudes, reduce
feelings of alienation, and increase support for those who have
been positively diagnosed.
The findings also raise implications for future research. In
particular, there is a need for improved understanding about the
effectiveness of current health promotion interventions aimed at
reducing the prevalence of hepatitis C. Where interventions have
had limited effectiveness, new interventions should be
evaluated. In particular, the possibility of training schemes
for patients of GPs to assume roles of peer educators merits
further research activity
would like to thank the participants of this study, the NFA
Health Centre for Homeless People, and Laura Sheard. In addition
thanks are extended to Tracey Campbell, Sally Read, and Angelo
Jaxon for their comments on earlier drafts of this paper
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