Barriers to and Facilitators of Hepatitis C Testing,
Management, and Treatment Among Current and Former
Injecting Drug Users: A Qualitative Exploration
Davina Swan, Ph.D.,1Jean Long, Ph.D.,2Olivia Carr, M.A.,3Jean Flanagan, B.N.S., C.N.S.,4
Helena Irish, R.G.N., C.N.S.,5Shay Keating, Ph.D.,6Michelle Keaveney, R.G.N., C.N.M.2.,7
John Lambert, M.D., Ph.D.,1,8P. Aiden McCormick, M.D.,9Susan McKiernan, M.D.,5
John Moloney, M.D.,10Nicola Perry, B.Sc.,1 1and Walter Cullen, M.D., MICGP1, 12
Hepatitis C (HCV) infection is common among injecting drug users (IDUs), yet accessing of HCV care, partic-
ularly HCV treatment, is suboptimal. There has been little in-depth study of IDUs experiences of what enables or
prevents them engaging at every level of HCV care, including testing, follow-up, management and treatment
processes. This qualitative study aimed to explore these issues with current and former IDUs in the greater
Dublin area, Ireland. From September 2007 to September 2008 in-depth interviews were conducted with 36
service-users across a range of primary and secondary care services, including: two addiction clinics, a general
practice, a community drop-in center, two hepatology clinics, and an infectious diseases clinic. Interviews were
analyzed using a grounded theory approach. Barriers to HCV care included perceptions of HCV infection as
relatively benign, fear of investigations and treatment, and feeling well. Perceptions were shaped by the dis-
course about HCV and ‘‘horror stories’’ about the liver biopsy and treatment within their peer networks.
Difficulties accessing HCV care included limited knowledge of testing sites, not being referred for specialist
investigations and ineligibility for treatment. Employment, education, and addiction were priorities that com-
peted with HCV care. Relationships with health care providers influenced engagement with care: Trust in
providers, concern for the service-user, and continuity of care fostered engagement. Education on HCV infection,
investigations, and treatment altered perceptions. Becoming symptomatic, responsibilities for children, and
wanting to move on from drug use motivated HCV treatment. In conclusion, IDUs face multiple barriers to HCV
care. A range of facilitators were identified that could inform future interventions.
prevalence of at least 50% in 49 countries or territories.1In
epatitis C (HCV) is a blood-borne viral infection that is
common among injecting drug users (IDUs), with a
Ireland, as in other developed countries, injecting drug use
accounts for most HCV infections,2and prevalence rates of
62%–81% have been reported among this group.3–5
HCV infection causes liver inflammation that may damage
the liver over time, potentially progressing to cirrhosis and
1School of Medicine and Medical Science, University College Dublin, Dublin, Ireland.
2Alcohol and Drug Research Unit, Health Research Board, Dublin, Ireland.
3Canal Communities Local Drugs Task Force, Dublin, Ireland.
4HSE Addiction Service - Dublin North, Dublin, Ireland.
5Hepatology Centre, St. James’s Hospital, Dublin, Ireland.
6Drug Treatment Centre Board, Trinity Court, Dublin, Ireland.
7East Coast Area, Addiction Service, Co. Dublin, Ireland.
8Catherine McAuley Education and Research Centre, Mater Misericordiae University Hospital, Dublin, Ireland.
9National Liver Transplant Unit, St. Vincent’s University Hospital, Dublin, Ireland.
10Patrick Street Clinic, Dun Laoghaire, Co. Dublin, Ireland.
11Community Response, Dublin, Ireland.
12Graduate Entry Medical School, University of Limerick, Limerick, Ireland.
AIDS PATIENT CARE and STDs
Volume 24, Number 12, 2010
ª Mary Ann Liebert, Inc.
hepatocellular carcinoma. Factors that accelerate this pro-
gression include HIV co-infection and heavy alcohol intake,
both of which are common among IDUs.6Therefore, HCV
screening among IDUs is vital, as is monitoring of liver health
among those chronically infected, and timely treatment to
prevent future complications. The current treatment for HCV
is combination therapy with pegylated interferon and riba-
virin, which achieves sustained viral clearance in 55–85% of
patients, depending on HCV genotype.7
Accessing of HCV care, particularly HCV treatment, is
poor among IDUs. A survey of IDUs recruited from com-
munity settings in three U.S. cities found 27.3% had seen a
health care provider since receiving a positive HCV diagnosis
and just 4.8% had initiated treatment.8A survey of IDUs at-
tending primarycare andamethadone clinicin Sydneyfound
local medical officer—but almost one-quarter had unsuccess-
fully attempted to obtain HCV treatment and one-third had
been offered treatment and declined.9A similarly poor ac-
cessing of care has been reported in Ireland. A cross-sectional
study found just 30% of IDUs attending general practice for
methadone maintenance had been referred to a hepatology
clinic and 3% had initiated HCV treatment.10Substantial de-
fection from HCV management pre-treatment at an Irish
tertiary care center has also been reported among IDUs.11
Several barriers to HCV treatment have been reported, in-
cluding active substance abuse, psychiatric and medical co-
morbidity, poor adherence with the treatment evaluation
process, patient refusal of treatment, and loss of patients to
follow-up.6,12Additional obstacles amongst those co-infected
with HIV and HCV include the need to initiate antiretroviral
health providers’ reports rather than patients, so do not reveal
why patients default from follow-up and refuse treatment.
Qualitative literature on IDUs experience of barriers to and
facilitators of HCV care is sparse. Several surveys of IDUs
attitudes to HCV treatment reported 53–82% were willing to
through responses on a Likert scale to scenarios outlining
risks and benefits of treatment, which may not match the
meaning and significance of treatment to IDUs, nor reflect
actual decision-making in practice.15Two surveys investi-
gated IDUs’ experiences and motivations to an extent by
asking why treatment had not been sought, accepted, or ini-
tiated. Motivations for seeking and accepting treatment were
not asked. Reasons cited by IDUs in Sydney for being un-
successful in obtaining treatment included their liver disease
was not advanced enough, long waiting lists for treatment,
concerns of the medical officer regarding treatment adher-
ence, being a current IDU, and heavy alcohol intake.9Reasons
for declining treatment offers included concern about treat-
ment side-effects, reluctance to have a liver biopsy, not feeling
sick enough, and having other health priorities.9Similar rea-
sons were given by IDUs surveyed in Canada for not seeking
treatment—additional reasons included lack of information
about HCV and treatment, concern about lethargy on treat-
ment, and lack of interest.14
A more in-depth qualitative study was conducted among
IDU women at a detoxification facility in Rhode Island.16
Barriers and facilitators regarding hepatitis and HIV testing
and treatment and hepatitis B vaccination were explored.
knowledge, stigma associated with injecting, access difficul-
ties, and psychological factors were identified as barriers to
care. One facilitator was identified—interest in promoting
one’s health. There is a dearth of research, however, with
IDUs of both genders, in a range of settings and at different
stages of HCV care, regarding what enables or prevents them
up, management and treatment. The present study is de-
signed to address this gap in knowledge.
Current and former IDUs were recruited from settings in
the greater Dublin area, Ireland during September 2007 to
September 2008. The settings were chosen to reflect the range
of settings that IDUs attend for addiction or HCV-related is-
sues, and included: two addiction clinics, a community drop-
in center, a general practice, two hepatology clinics, and an
infectious diseases clinic (Table 1).
A maximum variation sampling approach17was used to
recruit 36 IDUs who varied in their experience of and
engagement with HCV care. Recruitment of participants was
Table 1. Settings and Number of Participants Recruited
Description of settingNo. of participants, n¼36
7 Inner city two-partner GMS practice with 20 patients on oral
Specialist addiction clinic with 320 patients
Specialist addiction clinic with 65 patients
Community based drop-in program with role in harm reduction
and health promotion. Also methadone scripting.
Regional secondary/tertiary referral center for patients with
Regional secondary/tertiary referral center for patients with
Multispeciality clinic caring for patients with HIV and AIDS
and/or hepatitis C
Addiction Center #1
Addiction Center #2
Community drop-in center
Hepatology clinic #14
Hepatology clinic #22
Infectious diseases clinic3
GMS, General Medical Services.
754SWAN ET AL.
screening, to attendance at specialist hospital services for
further assessment, to initiating and completing treatment
(Fig. 1). Service-users at each setting were eligible to partici-
pate if they were over 18 years of age and currently or pre-
viously injected drugs. Given the sensitivity of the study
topic, those with ongoing psychiatric difficulties known to
staff in that setting were not invited to participate.
An invitation to participate in a research interview about
their experience of HCV and barriers to screening and treat-
ment was extended to eligible service-users by staff at each
setting. Service-users were provided with an information
sheet and a verbal description of the study and those who
were interested in participating were invited to meet the re-
searcher (D.S.). At this meeting, the researcher (D.S) again
discussed the study along with any residual points requiring
clarification and explained how the information would be
to these issues, potential participants indicated their consent
to participate in the study by signing a consent form. No fi-
nancial incentives were offered for participating. The study
was approved by UCD Human Research Ethics Committee
and the research ethics committees of the three hospitals in-
volved in the study.
Semi-structured in-depth interviews18were conducted
with individual participants in a private room at each setting.
Interviews lasted approximately 45 min and were audio-
taped with participants’ permission and field notes taken af-
terward. The interview topic guide included questions on the
participant’s history and experience of HCV care, from initial
screening through further diagnostic investigations and
therapeutic interventions. Using probes and follow-up ques-
saw as encouraging or discouraging their accessing of HCV
care. Participants were also asked for their suggestions for
facilitating access to HCV care in light of the barriers identi-
fied. The semi-structured nature of the interviews allowed
collection, transcription, and analysis were proceeding in
parallel, emergent issues identified in the analysis were in-
vestigated further in subsequent interviews. For example,
early interviewees introduced their experience of health care
providers and its relation to their accessing HCV care and this
was explored further in subsequent interviews.
Interviews were transcribed and analyzed using a groun-
ded theory approach.19Initially, transcripts were coded line-
by-line using the method of constant comparison. As coding
proceeded with detailed memo-taking reflecting on the rela-
tionship between codes, coding became more focused and
higher order. D.S. coded all of the transcripts, with a selection
of transcripts independently coded by W.C. and J.L. Differ-
ences in coding were discussed and resolved through
revisiting relevant extracts. The developing analysis was
discussed at team meetings and codes were revised and re-
named appropriately as the analytic process continued.
Qualitative software (NVivo 8.0)20assisted with the man-
agement and coding of interviews.
uptake of one intervention (e.g., screening) were similar to the
factors influencing the uptake of another (e.g., HCV treat-
ment). Thus, the barriers and enablers presented here apply to
HCV care in the broader sense. The analysis also revealed that
factors operated simultaneously, sometimes in opposite di-
rections of influence, to create at times contradictory and am-
bivalent experiences. We have tried to portray the nuances of
our participants’ lived experience. The barriers and facilitators
identified are organised under six overarching themes.
Several methods were utilized to enhance the validity of
our findings: (1) triangulation of data across multiple settings;
(2) an iterative process of data collection and analysis; (3)
triangulation of coding across several co-researcher perspec-
tives; and (4) continuation of data collection until no new
themes were emerging.21
Of the 36 participants interviewed, 28 were men and 8
were women. They ranged in age from 24 to 54 years, with a
Sampling framework and number of participants
HCV CARE BARRIERS AND FACILITATORS AMONG IDUs755
to inject drugs was 18.5 years (range, 14–29). Of those who
reported their main problem drug (n¼28), 79% indicated it
was heroin and 21% cocaine. Thirty-three (91%) participants
participants reported HIV/HCV co-infection.
Perceptions of HCV: Every injector has this invisible
infection and its effects are not as serious
as those of HIV
Prior to diagnosis and subsequently, participants’ percep-
tions of HCV were shaped by a discourse amongst their peers
Within this discourse, HIV is presented as a certain death
sentence (‘‘Ya have the virus...you’re dead man’’), while
and by some, ‘curable.’ HIV is considered rare, while HCV is
seen as common (‘‘everybody has it’’) and almost common-
place (‘‘it’s just like having a tattoo’’). This discourse presents
HCV infection as relatively benign, undermining perceptions
of the seriousness of the infection and any perceived need
for medical attention. Benign perceptions of HCV were often
referred to in explanations of why further investigations
and treatment were not accessed postdiagnosis. The power of
this discourse was evident in its residual use even by those
who subsequently became more informed and underwent
Although HCV was minimized and normalized, some
participants—particularly women—evidently felt there was a
stigma associated with the infection. They worried that con-
sulting the ‘‘hepatitis C nurse,’’ attending the hepatology
clinic, and seeking information about HCV in non-private
disclosing HCV positivity or admitting risk was a particular
concern for women and deterred some from seeking infor-
mation or testing:
I know they’d (health care professionals)...treat ya well and
be real nice, but for me anyway, I do be more embarrassed to
even say it.
Some participants felt particularly stigmatized because of
the route through which HCV was acquired:
[P]eople who got it through blood transfusions, people have
sympathy for them but because when you’re using drugs it’s
self-inflicted, people aren’t going to have sympathy for ya and
they basically don’t care.
When few or no symptoms were experienced, participants
generally assumed their health was relatively unaffected by
the virus: ‘‘I’m not sick at the moment. It’s not affecting me.’’
Their perception of good health was reinforced by the absence
of overt symptoms and the invisibility of liver damage: ‘‘[I]f it
these sorts of things.’’ When health problems were experi-
enced, some participants were uncertain whether they were
due to HCV and pointed to other factors as alternative expla-
nations. The view that HCV infection was not significantly
impacting their health was frequently given as a reason why
I was just thinking like, well I’m grand, I don’t feel sick...[S]o
why do I need to go (to hepatology clinic)?
Participants’ narratives revealed benign perceptions and
experiences of HCV could be disrupted through a number of
means. Information on the health implications of the infection
encouraged participants to have a more serious view of their
condition, in turn influencing some to seek or engage with
(GP) explained it to me, ‘‘Look, I know you don’t feel sick now
but....if you just sit and you just leave it, it can get worse and
worse and worse and you could be dead in 20 years.’’ So I
thought then. I said ‘‘Yeah, ok, put me down. I’ll go and I’ll get
the treatment done.’’
Awareness of the potential consequences of their condition
was anxiety-provoking for participants, igniting fears about
the future of their health: ‘‘[A]m I gonna get sick? Am I gonna
Witnessing others visibly ill or dying from HCV was an
I seen friends of mine getting sick and turning yellow and I
says, I better get treatment.
A few participants reported taking up further investiga-
tions and treatment as a consequence of receiving biopsy or
blood test results indicating the virus was ‘‘active’’ or causing
liver damage. The motivating influence of these clinical
markers may be due to refiguring perceptions toward illness
rather than health:
I got...another test off (GP)...and they said it was active in
me. So I just said I’d go (to hepatology clinic).
Participants recommended mainstreaming information
about riskfactors, healthimplications,and treatmentfor HCV
infection and education of service-users in addiction clinics in
particular. Education was seen as vital to address the mini-
mization of HCV and underlying fears. Some participants
noted privacy of care was important to minimize stigma.
Perceptions of HCV care: According to other drug
users, the investigations and treatments are more
severe than the infection itself
When participants realized HCV infection could have se-
rious health consequences, another set of obstacles deterred
them from engaging with care—the circulation among their
peers of what participants termed ‘‘war stories’’ or ‘‘horror
stories’’ about the liver biopsy and treatment. Stories about
the biopsy portrayed a huge needle, a painful procedure, and
likelyinjury ordeathduetoprofessionalerror:‘‘[S]he letairor
ended up in hospital.’’ Stories about treatment emphasized
severe side-effects, such as depression, mood swings, weight
loss, hair loss, and experiences akin to heroin withdrawal.
Less commonly, treatment stories portrayed it as ineffective,
counterproductive or dangerous: ‘‘[F]rom what I was hearing
was finished, people were feeling a lot worse...and one or
two people died.’’ Many participants reported hearing ‘‘hor-
ror stories’’ and the fear aroused created reluctance to engage
with hepatology services. One interviewee described hearing
‘‘horror stories’’ in a different context: The structural layout
and lack of discretion at a hospital outpatient clinic meant the
nurses’ ‘‘war stories’’ were overheard by patients:
756SWAN ET AL.
[O]ne of the nurses was telling the other one...that some guy
who had been on the hepatitis C treatment...had been told
in another hospital that because he was on the interferon-
ribavirin treatment, that his cholesterol had gone sky high and
he had a heart attack...They were discussing that loudly, so
that everyone around could hear...[I]t gripped fear into the
people who were going down that road.
Participants’ fear of treatment side-effects prevented up-
take of investigations and similarly, fear of and resistance to
the liver biopsy acted as a barrier to treatment.
Many participants described regaining a fear of needles
after giving up injection drug use. Those who underwent
HCV treatment reported getting used to self-injecting inter-
feron. However, the liver biopsy, and blood tests particularly,
created more difficulty:
[E]very week I’m in (hospital outpatient clinic) since last June
and I still can’t get the knack of giving blood. I’m petrified. I
hate it...I’ll get a ball of tissue and it’ll be shredded to pieces
by the time I’m finished.
Participants did not report this kind of anxiety or discom-
fort when describing their experience of HCV screening,
perhaps because most were still injecting drugs when initially
Information on investigations and treatment received from
health care professionals, from peers who accessed HCV
treatment, and from reading material encouraged interest in
and uptake of care. Information from health care profession-
als altered perceptions of investigations and treatment by
letting participants know what to expect, putting risks in
perspective and allaying some fears:
I ended up going and getting the biopsy because of the (GPs)
here telling me about it and that it’s not barbaric, the syringes
they use these days are a lot smaller. He pinched me arm and
says like ‘‘That’s more than what you’d feel actually when
you’re getting your biopsy.’’
even through difficult side-effects and having successful
outcomes encouraged others. This was identified by several
interviewees as having motivated them to seek treatment or
accept treatment offers:
There was a fella actually in the States that was on the inter-
feron...and it worked for him. And I knew he was very sick
and he went through it...[T]hen I met him and he said ‘‘It’s
gone outtame blood,totallygone.’’Sothat’swhenI saidI need
to do something about it.
Participants recommended education on investigations
and treatment, from the time of testing and diagnosis, to in-
form service-users what to expect and allay fears. Regarding
the liver biopsy, participants advised practice-related strate-
gies to reassure patients, including: informing service-users
in advance what to expect of the procedure, providing
adequate pain relief during and after, and one interviewee
recommended keeping patients in hospital overnight subse-
quently for observation.
Coping strategies: Blocking awareness, escape,
support and positive thinking
Participants used a variety of strategies in coping with
HCV infection, investigations, and treatment, including the
fears associated with them. Some described actively not
thinking about their infection, ‘‘pushing it aside,’’ ‘‘try[ing] to
forget about it,’’ which appeared to be a defense against
anxiety. Such participants avoided or delayed taking up HCV
investigations to protect themselves against ‘‘facing up to the
truth’’ or hearing bad news, for example that their liver is
badly damaged or they have the genotype least responsive to
treatment. In contrast, those who were willing to have the
liver biopsy preferred to know the state of their liver. Simi-
larly, those who welcomed the opportunity of screening
thought it better to know if they had contracted the infection.
Delaying investigations and treatment could generate its own
anxiety, as one participant who had HCV for over a decade
[I]n the back of me mind all the time I know it’s like the clock is
ticking...If I don’t do something soon...it’ll be like too late.
Avoidant forms of coping could be helpful during difficult
investigations. Two participants reported using forms of
psychological escapismduring bloods tests orthe liver biopsy
to ‘‘blank out’’ fear and pain. As one interviewee eloquently
described his biopsy experience:
I don’t like going in (for a biopsy)...But I’ll blank it out as best
I can. I’ve always had from being abused as a kid...this huge
ability to escape into like kind of netherworlds some-
where...[S]o I can like sit ina situation that might seemharsh,
but like I won’t be there...My body might be there but psy-
chologically I’ll be astro-flying or something.
Those who sought HCV treatment and accepted treatment
offers generally focused on potential benefits such as health
improvement or‘‘get[ting] rid of the hep.’’ Some were hopeful
or confident about clearing the virus. Others took the view
that ‘‘any chance is a chance’’ and were prepared to give it
‘‘one shot.’’ Such positive thinking helped sustain them
through treatment side-effects:
I would attribute part of that depression...to the treatment...
it’s finished, on a good day I’m gonna feel like really brilliant.
Personal determination assisted a few to persevere through
I’llgiveit onechanceandI’lldowhateverI havetodotogiveit
the one chance...I’ll do it to the bitter end, no matter how sore
or how painful it is, I’ll go ahead with it and just take it as it
The support of partners, family and peers helped partici-
pants when treatment was difficult: Having someone to ‘‘talk
to’’ and provide encouragement helped in coping with side-
effects. Practical support was reported less often but included
assistance with childcare and work or study commitments.
The education provided prior to and during treatment by
health care professionals in hepatology and infectious dis-
eases services, and the attention and concern staff showed
throughout treatment, was particularly valued:
[E]very time I’ve come (to hospital outpatient clinic), it’s been
great. (Nurse) walked through the side-effects, me liver stuff,
asked me how everything is. She’s been there on the phone.
She’s called me...That’s what the best part of it is. Cos when
ya feel like your world’s turned upside down and there’s
someone there that’s actually caring about ya, it makes it a lot
HCV CARE BARRIERS AND FACILITATORS AMONG IDUs757
A few participants had less educative experiences of
treatment: They reported a lack of information and one
dropped out of treatment as a consequence. Participants who
were struggling with treatment side-effects felt additional
support was needed and recommended the development of a
peer support structure.
Caring for others was reported by three male participants
as ameliorating the impact of treatment side-effects. Two
participants who experienced severe side-effects had pet dogs
and at times they struggled to maintain their environment.
However, the need to feed and exercise their pets improved
his dog was clearly an additional support.
[T]hat dog...gets me up early. Keeping him fed keeps me
relatively fed, watered, exercised. I’ve pride in looking after
him and having people say ‘‘Ah, yeah, he’s a lovely coat’’ or
‘‘He’s a lovely mannered dog’’ or ‘‘He’s very obedient’’...So
that dog keeps me going.
Another male participant who experienced few side-effects
attributed a protective effect to being busy caring for his
children. Two female participants had experience of treat-
ment: One had a child but reported struggling to care for him
and requiring her parents’ help.
Several interviewees recommended counseling to help
people come to terms with a HCV positive diagnosis.
Relationships with health care providers: Health care
providers’ verbal and non-verbal communication
influences uptake and attendance at services
Relationships with health care providers, especially trust
and confidence in providers, concern for the service-user,
and continuity of care, influenced participants’ accessing
of and engagement with investigations and treatment.
Some participants expressed a lack of confidence in health
care providers involved in their care or in health care
providers in general. Sometimes, they doubted their
knowledge and expertise in HCV: ‘‘Like AIDS and hepa-
titis, I don’t think doctors know enough about them.’’
Others’ past experiences had created distrust of health care
[A]s far as treatments or anything like that, I wouldn’t want
treatment...especially off (particular hospital). I mean the
trust is just not there anymore.
Participants appreciated when providers showed concern
for their welfare. Some felt providers involved in their care
were unconcerned about them. Others felt stigmatised by
providers on account of their drug use and reported inequi-
table treatment: ‘‘[Y]a can’t get past the triage nurse.’’ Ex-
periences and expectations of stigmatisation discouraged a
few from accessing hepatology services.
Continuity of care, where the relationship was positive,
allowed familiarity to develop and participants felt comfort-
able seeking information and receiving care from that pro-
(Nurse) was always here (hospital outpatient clinic) any time
I’d come up. She was the one gave me bloods. Shegives me the
needles (interferon injections) in me belly...I think it’s a con-
nection. Like I’d sooner quicker (Nurse) stick the needle into
me than me partner and I’m with him 14 years.
care providers, particularly with doctors prescribing metha-
done: Some reported frictional, distant or impersonal rela-
tionships: ‘‘Me doctor (GP) knows nothing about me. Me
doctor knows me name, that’s it.’’ Others described good
rapport and supportive and encouraging relations: ‘‘Even
though I have slips...I can talk to me doctor (GP) about it.’’
Participants had mixed experiences of HCV management.
Some described GPs who were informative and encouraged
further investigations and treatment. Others received little
could be a barrier to understanding: ‘‘The doctor, he just
said...‘‘hepatitis C and blah blah blah.’’ I didn’t understand
what that meant.’’ Many felt they knew little about HCV and
had significant gaps in their knowledge even years after di-
agnosis, including misconceptions about routes of transmis-
sion, such as believing HCV could be contracted through
shared toilet facilities, ‘‘dirt’’ or ‘‘dust,’’ reusing one’s own
needle, and according to one participant, the ‘‘continuous
puncturing ofyour veins.’’ Some voiced uncertainty about the
risk of developing HCV-related complications and how life-
style factors could impact their condition. Most of those who
felt well-informed reported learning what they know quite
late in the health care process, from health care professionals
at specialist hospital services prior to and during treatment.
Participants recommended greater communication be-
tween health care providers and service-users, including ex-
plaining the purpose and results of investigations.
Pressures toward and facilitators of HCV care: Contact
with services, encouraging professionals, family ties,
recovery from addiction, and convenience facilitated
uptake of care
Contact with health care or prison services was the main
facilitator of HCV screening. Most participants were initially
screened when they entered a drug treatment program or
prison; some were tested when they were hospitalized. Fe-
male participants’ contact with services varied slightly from
males. At least one female participant was tested when she
went for a smear test; another was tested when pregnant.
While prison facilitated screening, it was a barrier to HCV
treatment for two participants. In the case of one, treatment
of treatment; in the case of the second, his hospital appoint-
ments were not facilitated by the prison and although given a
due date to start treatment, this was never followed up.
Reasons participantsgavefor havingHCVtestingincluded
perceiving screening as a routine or standard part of the
program or institution. Most did not mind having testing or
appreciated the opportunity. One interviewee felt refusing
was not a viable option, however:
[T]here was a lot of things going on, people getting thrown off
done that if I’d said no. They probably wouldn’t have
but...why rock the boat?
Other reasons for having testing included concerns about
possible HIV infection, perceived risk behaviors such as
sharing injecting equipment in prison or with someone they
considered likely to have an infection, or because someone
they had shared with had tested positive for a blood-borne
758 SWAN ET AL.
virus. Although participants cited these additional motiva-
tions, the fact that most did not get tested until coming into
contact with services suggests convenience is the most im-
portant facilitator. Convenience impacted attendance at spe-
cialist hospital services and uptake of treatment. Distance
from the hospital discouraged attendance. A couple of par-
found this more convenient.
Two participants were screened for HCV infection decades
after their drug use, upon becoming symptomatic. Both were
approximately 10 years older than the other participants and
had given up drug use almost 30 years previously. One had
been unaware that he was at risk of HCV infection. He had
given up his drug use without any form of treatment. The
other had attended a rehabilitation center.
Health problems motivated a few participants to access
HCV care post-diagnosis: These participants experienced a
deterioration in health or the appearance of disturbing
symptoms which they attributed to HCV: ‘‘I woke up...and
the bottom part of my legs had swollen. Like they were bigger
than my head...So...I tried to link back in (with hepatology
clinic).’’ Many of those who were not engaging with investi-
gations and treatment reported they would consider doing so
if they became ill.
were frequently motivated by emotional ties with partners
and children and concern about the impact of a shortened
lifespan or poor health upon their family. Some reported that
when they met their partner and/or had children that they
began to consider addressing their HCV:
[S]ee, I hadn’t any kids (at diagnosis)...It was only in later
years, now that when I have children an’ all, ya tend to look at
it, ya know, look after yourself, if anything happens me there’s
nothing to look after them.
Emotional bonds and family responsibilities were usually
one of a number of factors influencing treatment.
addiction: HCV infection was viewed as ‘‘the last straw’’
hanging over them from their drug use and addressing their
health situation part of their overall life improvement.
[T]here’s no point in getting off drugs and getting a job if
you’re gonna have this horrible disease hanging over your
Participants also noted that giving up drugs created a sta-
have time to attend hospital appointments.
A number of participants reported ‘‘need[ing] a push’’ or a
‘‘kick up the backside’’ if they were to have investigations and
treatment. The push which they needed usually consisted of
encouragement and advice, often from a service-provider:
‘‘The doctor sitting there...telling ya ‘‘Look, you’ve hepatitis
C. You need to go do something about this.’’
Obstacles to and pressures against HCV care:
Continued substance use, employment, contraindications,
lack of reminders and lack of opportunity
reduced uptake and attendance at services
Uncontrolled drug addiction was the main barrier to HCV
screening prior to contact with services that participants
identified and a barrier to further HCV investigations and
treatment. Participants described uncontrolled drug addic-
tion as having their life consumed by drugs: ‘‘it’s just a con-
stant 24-hour thing,’’ ‘‘it just consumes every part of you.’’
Days are filled finding money to feed one’s habit while the
need for drugs crowds out other concerns. Participants em-
phasized that this diminished life space left little concern for
one’s health or time to attend appointments.
difficult, an obstacle that was obviated in specialist hospital
services by nurses’ flexibility. The potential impact of HCV
treatment side-effects upon job performance and ability to
make ends meet was a significant concern for those consid-
ering treatment. One participant delayed treatment until he
had secured job tenure while another had to give up work
because of treatment side-effects. Current educational com-
mitments posed a competing priority to investigations and
treatment in the case of two participants.
Participants described lengthy waiting times during hos-
pital outpatient visits, which a few noted was difficult for
those addicted to drugs. Forgetting dates led service-users to
miss hospital appointments, a difficulty which some attrib-
uted to the length of time prior to appointments and one in-
terviewee attributed to the tendency of drug users to ‘‘live in
the here and now.’’ One interviewee reported recently re-
ceiving reminders from the hospital in the form of texts to his
mobile phone that helped.
Lack of opportunity to access investigations and treatment
was described. A few participants noted difficulty for those
not on methadone maintenance programs to access HCV
screening or to know where to go for testing. Others reported
not being referred to specialist hospital services for further
HCV investigations and treatment or being referred after a
considerable number of years:
It was the first doctor (GP) that told me I had hepatitis. He was
hepatitis...[I]t was just left.
Several reported their doctor had not discussed treatment
availability. Others had not been offered treatment subse-
quent to referral. A few reported having to ‘‘chase’’ treatment
more or less successfully themselves:
I...actually chased my doctor (GP)...I’d ring him ‘‘Any
news, any news?’’ He said ‘‘No news.’’ So I rang...(hospital)
here and I said like ‘‘What’s the situation like? I put in for this,
now I need it. What’s happening?’’ So I got more motivated
because me son and me wife but I had to chase it.
Participants perceived the requirement of 6 months absti-
nence from alcohol and illicit drug use in order to obtain HCV
treatment as a barrier for many. Several, however, reported
giving up drug or alcohol use in order to obtain treatment:
(Hepatologist) said he’d help me with the interferon but I had
to stop drinking. So I just stopped drinking.
Two participants had health conditions that contra-
indicated HCV treatment.
Interviewees recommended making HCV care easier to
access. Some suggested a ‘‘one-stop shop’’ approach where all
HCV investigations and treatment could be accessed in the
HCV CARE BARRIERS AND FACILITATORS AMONG IDUs759
Our findings suggest many factors influence access to HCV
care by IDUs and rarely is just one factor in isolation an issue.
Primary obstacles to care were perceptions of HCV as rela-
tively benign, feeling well and fear of investigations and
treatment. This is consistent with previous surveys of IDUs
exploring treatment barriers.9,14Participants’ perceptions
were influenced by the discourse about HCV and ‘‘war stor-
ies’’ about the liver biopsy and treatment within their peer
networks, and compounded by an uncertain knowledge. The
study by Lally et al.16of IDU women similarly found a low-
level of knowledge about HCV was a major barrier to care.
Knowledge uncertainty and the discursive production
amongst IDUs of HCV as relatively benign have been re-
ported as barriers to HCV prevention.22
Learning HCV infection can cause serious, life-threatening
liver disease, becoming symptomatic or receiving test results
showing the impact of the virus encouraged uptake of care,
which is consistent with survey findings that physical health
problems and being told by a health provider that HCV can
cause liver damage and liver cancer are associated with
greater treatment willingness.8,14
Experiences of the infection and perceptions of its man-
agement and treatment were not straightforward, however.
Some participants expressed uncertainty regarding whether
their health problems were due to HCV and attributed
them to other factors—highlighting the importance of sub-
jective feelings and judgements as well as clinical markers
in perceptions of health and illness.23Despite the discourse
that ‘‘everybody has hep,’’ some participants—particularly
women—felt stigmatized because of the infection and
feared exposure of their health status, which impacted
negatively on help-seeking. These concerns have also been
reported by women who acquired HCV infection iatrogen-
ically, highlighting the need for privacy of care and strate-
gies to minimise stigma.24Fear of test results and of pain
during investigations are also not unique to the substance
abusing population, and are reported obstacles to cancer
Difficulties accessing HCV care were reported, including
limited knowledge of testing locations, not being referred
for treatment, ineligibility for treatment because of drug or
alcohol abuse, and the inconvenience of travelling. Partici-
pants’ accounts of some health providers not referring
them for specialist investigations and treatment are con-
sistent with previous findings on HCV management in
general practice.10,26Participants’ accounts of some pro-
viders not discussing or offering treatment are also con-
sistent with other studies of IDUs.8,9,14Limited knowledge
of testing sites and the inconvenience of travelling were
obstacles reported by Lally et al.16’s IDU women also.
Whereas Lally and colleagues’16participants, however, re-
ported health providers were not as likely to offer hepatitis
testing as HIV testing, this was not an obstacle described
by our participants.
While the barriers and facilitators identified within this
study are broadly consistent with those identified by Lally et
al.,16our participants described a more extensive range of
influences on HCV care, particularly facilitators. Additional
barriers identified within our study included feeling well,
stigma associated with HCV, fear of liver biopsy, forgetting
appointments, and demands of work and study. Additional
facilitators included becoming symptomatic, the influence of
trusted health professionals, a desire to rid oneself of a virus
associated with drug use, and the influence of peers who
completed treatment. The broader range of influences iden-
tified in our study may be due to our more heterogenous
A relatively small number of women were interviewed,
although this is reflective of the lower number of women
in drug treatment.27Service-users with ongoing psychiat-
ric difficulties were excluded from the study. This likely
limited the potential exploration of mental health prob-
lems as a contributing barrier to HCV investigations and
Only one person who had never been screened for HCV
was interviewed. This may indicate successful implementa-
tion of protocols around screening. However, most partici-
pants were on a methadone treatment program and those
who were not on methadone had given up their drug use a
number of years ago. Thus, the experiences of current IDUs
with little contact with services may be under-represented
Implications for clinical practice and future research
to target people before they begin injecting drugs and to reach
those whose drug use was many years ago and who may be
at IDUs in particular should address perceptions of HCV as
relatively benign and views that feeling well mean the virus is
IDUs understand the potential health implications of HCV
infection, without compounding their fear and reducing
possibility of engagement in long-term follow-up. Avail-
ability of treatment should be emphasized and lifestyle mea-
sures explained (including engagement with follow-up) that
may improve their outcomes. Sustained education among
IDUs on HCV investigations and treatment should be a pri-
ority, so service-users know what to expect and have realistic
perceptions of risks and potential side-effects. Involving
peers—particularly those who completed HCVtreatment—in
health promotion efforts may be beneficial.
Increasing accessibility of HCV investigations and treat-
ment should also be a priority. Discussing treatment with
IDUs and referring them for specialist investigations emerged
as obvious ways of improving access based on the accounts of
our participants. Consideration should also be given to pro-
viding HCV treatment at locations where IDUs receive their
methadone treatment, disseminating information on sites
which offer HCV testing, and providing testing at needle
the infection and its care may be conflicted and ambivalent,
and there are many and opposing influences on uptake of
care which may change over time. Maintaining an open and
assist their decision-making.
760 SWAN ET AL.
Effective communication regarding the purpose of tests
and meaning of results is important for the supportive func-
tion it serves and the influence it has on interest in treatment.
Preparation for liver biopsy is important—particularly,
highlighting theadvantage ofbeing better informed aboutthe
current health of one’s liver and discussing patients’ concerns
and anxieties. Additional supports while on HCV treatment
and peer support should be explored. The intensive educa-
tion, support and encouragement provided by specialist
nurses greatly assisted participants through HCV treatment.
We suggest consideration be given to this intervention being
provided more widely, especially as part of addiction and
We recommend the perspectives of IDUs who are cur-
rently injecting drugs and in little contact with services be
explored in future research, as this group likely face chal-
lenges different from IDUs on methadone. A fuller picture of
barriers to care would be provided by an investigation of the
experiences and perspectives of service-providers who de-
liver HCV care to IDUs and we are currently investigating
the obstacles and facilitators encountered by providers. We
recommend the strategies suggested above for improving
care form the basis of a ‘‘complex intervention’’ and this be
This study was funded by a Health Research Board grant
RP2006/165. Many thanks to the service-users who shared
their experiences with us and the health/social care profes-
sionals at each site whose assistance made the study possible.
We also thank our colleagues Anne MacFarlane (Department
of General Practice, NUI Galway), Paul Sullivan (Department
of Humanities and Social Sciences, University of Bradford),
Jan Klimas, and Catherine Anne Field (School of Medicine,
UCD) for their helpful comments and feedback on earlier
Author Disclosure Statement
No competing financial interests exist.
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Address correspondence to:
Davina Swan, Ph.D.
Centre for Immediate Care Services
School of Medicine and Medical Science
Room C110, Health Sciences Centre
University College Dublin
Belfield, Dublin 4
762 SWAN ET AL.
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