The literature search resulted in 1554 citations (Fig. 1). After screening titles and abstracts, 50 studies were selected for full-text screening. Nine studies fulfilled the eligibility criteria and were included (8,9,10,11,12,13,14,13).
Most studies involved interviews except for one which used open ended questions at the end of a survey (10). The reports were published between 2014–2021 with the majority after 2017 (Table 1). Studies were set in the United States, United Kingdom or Australia. As most studies were qualitative in nature, they tended to have a small sample size; however the survey involved 362 respondents (10) and another study involved 48 participants (13).
Table 1
Item (n = 9)
|
|
Count
|
Year of publication
|
|
|
|
2014–2015
|
2
|
|
2016–2017
|
0
|
|
2018–2019
|
5
|
|
2019–2020
|
1
|
|
2021
|
1
|
Country
|
|
|
|
United States
|
4
|
|
United Kingdom
|
3
|
|
Australia
|
2
|
Setting
|
|
|
|
Syringe exchange program
|
2
|
|
Community based outreach program
|
3
|
|
Drug treatment service program
|
3
|
|
Inpatient detoxification
|
1
|
Methods
|
|
|
|
interviews
|
8
|
|
open-ended survey
|
1
|
Sample Size
|
|
|
|
10–19
|
2
|
|
20–29
|
4
|
|
30–39
|
1
|
|
40–49
|
1
|
|
50+
|
1
|
Table 2: Study Descriptions
Authors, Year, Country
|
Primary Objective
|
Inclusion Criteria
|
Setting
|
Participant Characteristics
|
Barocas et al., 2014, United States
|
To examine characteristics associated with HCV screening among PWID utilizing a free, multi-site syringe exchange program and to elicit their perceptions of barriers and facilitators to screening for HCV.
|
18 years of age or older, could speak and read English and reported a history of injecting drugs.
|
Syringe exchange program operating through office-based locations in two large cities and via mobile van units that serve the suburbs, surrounding rural communitites, and other smaller cities in Wisconsin.
|
69% male
Median age of 28
83% white
|
Coupland et al., 2019, Australia
|
To explore the impact of the Hepatitis C Incidence Transmission community-based outreach model in engaging and retaining newly diagnosed PWID in HCV testing as an entry point into the HCV care cascade.
|
16 years of age and older, have injected drugs in the previous 12 months, and acquired HCV infection while enrolled in a community-based prospective observational study of hepatitis C vaccine preparedness.
|
Community based outreach program in Sydney, Australia.
|
57% male.
Median age of 27
36% self-reported a culturally diverse background
|
Harris et al., 2018, UK
|
To inform and assess the HepCATT study.
|
Drug treatment services clients who currently or previously injected illicit drugs. Aged 19-69.
|
Drug treatment services program in England.
|
79% male
Age range 19-69
|
Harris et al., 2014, UK
|
To examine participants’ accounts of HCV testing, especially regarding barriers to uptake.
|
18 years of age or older, proficient in English, currently injecting an illicit drug (within the last 30 days), and having injected illicit drugs for at least six years.
|
Community based opioid substitution therapy prescribing services and drug user networks in London, England.
|
22 HCV antibody negative and 15 postitive
73% male
Age range 23-57
76% were white British
|
Latham et al., 2019, Australia
|
To explore the acceptability of point-of-care testing for PWID within the larger Rapid-EC pilot study.
|
Ages 19-56 with a history of injecting drugs and participating in the Rapid-EC pilot study offering point-of-care testing.
|
Needle syringe programs in Melbourne, Australia.
|
74% male
Age range 19-56, median 44
|
Phillips et al., 2021, UK
|
To explore the experiences of clients and staff involved in Project ITTREAT and assess the facilitators and barriers to a community-based HCV service.
|
Drug and alcohol treatment service attendees with current/previous HCV infection and past or current injection drug use that had been offered and/or were engaged in the HCV service.
|
Drug and alcohol treatment services in England.
|
80 % Male
100 % white
|
Skeer et al., 2018, United States
|
To provide a greater understanding of the perspectives and experiences of young PWID navigating the HCV care continuum, and in turn, to inform future treatment as prevention strategies.
|
Currently injecting drugs or had injected drugs in the past but weren’t actively injecting, self-disclosed HCV positivity and between the ages of 15 and 30.
|
Community outreach program in Boston Massachusetts.
|
50% male.
Age range 22-30
87.5% Non-hispanic white
|
Tofighi et al., 2020, United States
|
To identify the complex interplay of social and environmental factors that influence engagement along the HCV care continuum
|
18 years of age and older admitted to inpatient detoxification for opioid use disorder.
|
Inpatient detoxification hospital in New York City. Though thie particpants were admitted at the time of the interview the questions probed participants experience in the community, not in the hospital.
|
78% male
Age range 21-62 (mean 44)
35% African-American, 26 % Hispanic
65% diagnosed with HCV
|
Ward et al., 2021, United States
|
To evaluate perceptions of social network interventions for HCV testing, linkage to care, and treatment. In particular, PWID willingess to perform the peer mentor role and to understand the barriers and facilitators of this approach.
|
18 years of age or older, English speaking, HCV antibody positive and had a history of injection drug use.
|
Community based research organizations and provider referral in Baltimore, Maryland.
|
75% male
Age range 32-65 (mean 51)
75% Black/African American
|
Table 3: Barriers and Enablers to HCV testing
(Authors), year (Country)
|
Sample
|
Method
|
Barriers
|
Enablers
|
Barocas et al., 2014, United States
|
n=362
|
Open-ended survey questions
|
Fear of positive test
Low perceived risk
Stigma associated with HCV and/or IVDU
Lab characteristic
Lack of access to transportation
Time contraints
Lack of knowledge of testing
Cost
Lack of access to MD/PCP
Not having to take initiative
Lack of rapport with provider
Confidentiality
Lack of motivation
|
Health concerns for self or others
High perceived risk
Lab characteristic
Access to transportation
Mobile testing center/SEP
Adequate time
Knowledge of testing
Free testing
Access to MD/PCP
Not having to take initiative
Rapport with provider
Confidentiality
Motivation
|
Coupland et al., 2019, Australia
|
n=28 at baseline,
25 at 12 months
|
Semi-structured interviews
|
|
Building trust and willingness to be tested for hepatitis C
Making information about HCV testing and treatment salient
|
Harris et al., 2018, UK
|
n=48
|
In-depth interviews, focus groups and observations.
|
Perceived lack of testing availability
Perception of minimal HCV risk
Fear of diagnosis and HCV stigma
Confusion about the testing and treatment process
Aversions to having a venous sample taken
Concerns of interferon treatment
Desire to move away from a drug user identity
Limited psycho-social ‘stability’
Testing could be destabilising if it revealed them to be HCV positive
Perception of GPs lack of interest in them and HCV more generally
|
Intervention timeliness: capitalising on stability and new treatments
Personalized and flexible care
HCV visability and communication structure
Streamlined testing and treatment pathways
|
Harris et al., 2014, UK
|
n=37
|
Qualitative life history research
|
Fear in relation to diagnosis
Apathy regarding mainstream health care services
Optimism in relation to risk knowledge
Confusion in relation to HCV testing and its consequences
|
|
Latham et al., 2019, Australia
|
n=19
|
Semi-structured interview
|
People and place
Rapidity of result return
|
People and place
Method of specimen collection
Rapidity of result return
|
Phillips et al., 2021, UK
|
n=15
|
Semi-structured interviews
|
Lack of stability
Stigma
Negative discourse around testing and treatment
|
Trusting client-provider relationship
HCV as part of recovery pathways
Mitigation of prevous negative experiences of secondary care
Positive narratives around HCV care
|
Skeer et al., 2018, United States
|
n =24
|
Interviews
|
Deservingness of HCV treatment and stigma
Perceived lack of referral to HCV treatment or follow up
Disincentives around HCV treatment for PWID
Perception of need for treatment
|
|
Tofighi et al., 2020, United States
|
n =23
|
Interviews
|
Limited knowledge of HCV
Limited access to healhtcare providers addressing HCV
Competing priority of use
Benign perceptions of HCV infection
Limited awareness of the availability of DAAs
Cost
Inability to locate or receive referrals for screening
Physician preferences to not initiate HCV treatment
|
Accessibility of testing sites
|
Ward et al., 2021, United States
|
n =20
|
Semi-structured interviews
|
Drug use and lack of social support
Challenges to providing peer support
|
Perception of HCV prevalence within networks
Willingness to provide support in social networks
|
Two studies examined participant experiences with screening or testing for HCV as their primary objective (10,15), while two others looked at the whole care contiuum, from screening to treatment and monitoring (14,8) (Table 2). The remaining studies looked at experiences of participants in specific testing programs (13,16) or specific modes of testing delivery such as community-based outreach, point-of-care testing, and social network interventions (9,12,11). Common barriers and enablers were seen across all studies (Table 3).
Barriers To Testing
Perceived low risk for HCV
In the earliest paper, Harris et al. (15 p335) reported that the risk of HCV among participants was perceived to be minimal: "Through them years, yeah, I have used a spoon that maybe someone else has used on it, but I've never used dirty works. You know, nothing dirty". A later paper by Harris et al. (13) reported that there was a perception of minimal HCV risk due to relatively safe injection practices and/or lack of symptoms. Barocas et al.(10) noted that participants perceived their risk of HCV to be low based on never sharing needles, lack of symptoms and having received a negative test result in the past.
Fear of diagnosis
Fear of learning test results was a barrier to testing; "I don't think I'd be strong enough in my mind if I did have it to handle it [HCV] and it could make me spiral worse out of control. That would be my reason", "Just the fright of it [HCV], if I did have it probably, I don’t know, the fright of it", "I'd rather not know" and "I'd rather die of ignorance at that time" (15 p336). Multiple PWID indicated they were “scared of the result” with one participant quoted as saying “I worry about Hep C more than HIV. I’m afraid of what the result might be” and another stating “I’m in denial. I don’t want to hear that I have it” (10 p4).
Stigma
Participants perceived stigma associated with both injection drug use and HCV infection to be obstacles to seeking HCV testing and used words such as “shame”, “embarassment”, and “taboo” when describing their experience.
"People know that most of the time you get tested for Hep C because you’re an IV user. People judge you no matter what your results are. That’s the worst feeling ever" (10 p5). One participant in the paper by Latham et al. stated
They need more local like clinics. Like in the hood, in the ghetto, in the slums. Not just in the nice part of town – because they look like shit, so they don’t really want to go out, you know, to a Johns Hopkins or to a University of Maryland where you’ve got to go downtown and you’ve got to see regular people, you know, and feel judged or feel like people are talking about you or watching you. (11)
Antipathy in relation to mainstream health care services
Participants actively avoided mainstream healthcare services because they expected discriminatory treatment, posing a barrier for HCV testing. “I've never felt comfortable with any GP because, in the past, when you've gone to a GP you say ‘I wonder if you can help me, I take heroin...’’(exclamation of horror) sorry, I don't deal with that here’” (15 p336). Another participant in the same study had never been tested despite reporting 17 years of daily injecting. They stated, “They said to go up to the hospital [for a HCV test], and it’s like, I couldn’t be bothered to go up the hospital” (15 p336). This reluctance may be due to shame and embarassment when having to show their scars; “If a doctor wanted to examine us and I’d roll my sleeves up and I’ve got track marks, it was embarrassing man, it was horrible” (15 pp336-7). Poor venous access and prior negative experiences were reasons to avoid going to get tested in the hospital: “What’s the point of going to the hospital? Cause if I can’t find a vein, they definitely won’t be able to find a vein” (15 p337).
Limited knowledge of HCV and testing
Participants expressed limited knowledge of HCV; “I don’t even really fully understand Hep C. You get that from needles?” (14 p4). Harris et al. included multiple quotes from participants describing the misconception that HCV transmission risk is equal between injecting and sexual practices:
I shared with him because he was never unfaithful to me"and "I know I haven't got it [HCV] anyway… [because] I've probably had less than five sexual partners in the last 10 years and of them none of them are users (15 p337).
Some participants had the misconception that there was a vaccine for Hepatitis C; “I’ve had boosters for hep C. I’m not due anymore boosters now” (15 p337). There was an optimism amoung some participants that lack of identifiable symptoms means they do not have HCV (15).
Lack of rapport with provider
Both a lack of access to a medical doctor/primary care provider and a lack of rapport with the provider are barriers to HCV testing. "I had one doctor who tried, you know, ‘Oh you need to go and get tested, 'and like he'd frighten me then and I'd go and see another doctor next time." (15 p335). "I would be you know… out in the suburbs or whatever other doctors I've been to where I say I'm an IV drug user and they don’t respect me. I don't know they're just like not… educated about it" (15 p250). Skeer et al. also noted this as a significant barrier with one participant stating: “They are very uneducated on addiction. They have a big stigma when it comes to addicts. If they find out you’re an addict, their whole demeanor changes. They rush you, they slam things, they are very impatient with you and it’s very saddening to see” (8 p250).
Lack of motivation or competing priority of drug use
Barocas et al. (10) noted a lack of motivation as a barrier to testing identified by 10 of the participants. The study by Ward et al. (11) investigated the impact of social network interventions; they found that a barrier to engagement in HCV testing and treatment was onging drug use of the injection drug use network members. They note that the network members had difficulty prioritizing anything outside of avoiding withdrawal, therefore HCV testing engagement was limted; one participant stated “I brought my brother here but he keeps getting high. I brought his girlfriend here but they just keep getting high, man; they don’t want the help”.
Limited awareness of new treatment options
The paper by Ward et al. (11) described the lack of awareness of treatment options that result in cure and without believing in a cure, participants may not get tested:
I think because [network members] still don’t realize that there is a cure for [HCV]…Because I just recently heard about the cure for it. And when I first heard it, I didn’t want to believe it neither. Because they were always ‘no cure, no cure, no cure’ and then all of a sudden somebody said there’s a cure. And so one person said what you’ve been constantly hearing, [that] there’s [no cure], you begin to believe what you hear”. (11)
Harris et al.(13) also noted a barrier to be concerns about interferon treatment, which was a poorly tolerated therapy with low efficacy. Tofighi et al.(14) noted the limited awareness of the availability of Direct Acting Antiviral (DAA) therapy as a much better tolerated and highly efficacious treatment to be a barrier. Negative discourse around treatment was found to be a barrier in the study by Phillips et al.(16) with fears of treatment, concerns of the long duration of treatment courses, negative stories passed on from their peers, and fear of liver biopsy all contributing.
Enablers To Testing
Increasing awareness of HCV testing and treatment and providing positive narratives surrounding care
Positive word of mouth stories have made a difference in encouraging people to get tested; traditionally negative stories have dissuaded clients from seeking treatment but stories of newer more effective and better tolerated DAA therapies, convenient dry-blood-spot testing versus having to take a venous blood sample, and Fibroscan® technology instead of having to get a liver biopsy, have all facilitated participants in engaging in care (16). One participant spoke about the new treatment options: “It’s just general, you just sit and talk, but everybody’s raving about this new stuff, everybody claims that ‘oh I know someone that’s done it’” (16 p182). Coupland et al. noted that making information about HCV testing and treatment salient and tailored to the individual also helped with engagement in testing:
The part about my kids really stuck out, ‘cause that was the part that was important to me most of all. And you answered my questions regarding that. I think a doctor would have jabbered on a bit. You answered my questions then you went ‘And this is the other parts which could affect your life’. When you gave me the result, you answered my questions first and then you gave the spiel afterwards” (9 p181). Increasing awareness of cure helped to engage PWID: “[What was your understanding?] When you got it [HCV], you got it, that’s it. And you’ll eventually die from it. [But now?] Yeah, I know you can clear it and you can live a normal life (9 p181).
Ward et al. noted that utilizing social networks could help to increase awareness of HCV testing since there was an overwhelming willingness of the participants to discuss HCV testing and treatment in their social networks with people whom they may not know well but have injected drugs with. Many of the participants felt comfortable discussing HCV and many had already had conversations with network members about HCV (11). One participant stated:
We’re already doing something we have in common…I’m talking about something positive, like going to the program and going to groups and meeting therapists and stuff like that. I would feel more comfortable about, ‘Hey, man, you ever had your Hep C checked out? Because you know we do a lot of damage to our bodies, man, when we are out here using.’ That’s how I would approach it” (11 p 6).
Another participant in this study stated:
Hire me. I would [encourage people to get tested and treated for HCV]. I mean, it would give me something to do. It would make me feel better… Because I would only be doing it for so many hours. And you have to go in certain neighborhoods too. That’s another thing. Where there is drug use. And who’s best to go but an ex-addict (11 p 6).
Positive rapport with provider
Coupland et al. noted the high level of rapport with staff at the community outreach center made a significant difference in engaging PWID;
It’s cool to come and talk to youse and hang out whereas a doctor does not have the same rapport that you would get with me or anybody else. The doctor would go ‘Oh yeah, you’ve got it, this is what you can do, okay see ya later.’ Whereas you care a little bit more. (9 p181)
Having well informed and non-judgemental care providers helped as well: “Youse are young and, you know, up with shit. That helps too. Youse have got knowledge of how things are in the streets and what not, because of what youse do” and “There’s no judgment here. You are very understanding and easy going” (9 p180). Latham et al. found that having site staff that “deal with [drugs and related issues] every day” was important as it meant that they were “not judgemental” (12 p920). This theme was repeated in research by Phillips et al.:
I mean, I have to say I think [HCV Nurse] is one of the main people behind and she’s, she’s so friendly and nice that she just puts you at ease anyway. There’s not like, you’re not dealing with fearful doctors with a sense of impending doom on all sides. (16 p180)
Accessible testing options
Accessibility of testing was important. Barocas et al. (10) noted free testing, access to transportation, and mobile testing centers/syringe exchange programs are all enablers to testing. Ward et al. (11) noted that reaching people in their community was helpful. This was echoed in research by Tofighi et al.;
“I am not gonna go to no building and get tested [for HCV] because I don't have the time for that. If that mobile van is sitting out there, and they telling me that's what it's for, I will go in there. It will ease my consciousness” (14 p5).
Capitalizing on moments of psycho-social stability allowed nurse facilitators to enable engagement and having providers who are invested in each individual was helpful: “She’s even phoned me up to say, listen, don’t forget, if you don’t want to go, let me know. She’s good enough, she could have just sent me a letter out and just said, well, I sent him a letter, he never turned up.” (13 p766)
Personalized care
Latham et al. found that participants had discrepant views about the type of sample collection used for testing whereby some participants preferred a mouth swab as a method of testing “It’s like less hassle getting blood sounds really intense, but doing a mouth swab, sounds really non-chalant. I’d come every week if that’s all that it was” while another stated:
I’d rather just do the blood work [from a vein]. Cause I’m not just worried about hep C. I’m worried about the whole lot. So I’d rather do the blood ‘cause then I’ll know I haven’t got hep C, hep B and HIV” (12 p921).
Views were discrepant regarding the rapidity of result return as well; most preferred a same-day result whereas for others the same-day result was unnecessary. Those that preferred the same-day result noted that it “saves a lot of stress” if the result is negative and “get[s] the ball rolling sooner rather than later” if the result was positive (12 p921). Others found it unnecessary to get a result in the same day:
I don’t do things like share with other people, give my blood to other people, make other people vulnerable to it, so I don’t have to worry… That’s why it doesn’t matter to me if they give me the result today or next week, whatever.” (12 p921)