Barriers to and Facilitators of Hepatitis C Testing, Management, and Treatment Among Current and Former Injecting Drug Users: A Qualitative Exploration

Abstract

Hepatitis C (HCV) infection is common among injecting drug users (IDUs), yet accessing of HCV care, particularly 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 discourse 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 competed 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.

Views and experiences of hepatitis C testing and diagnosis among people who inject drugs: Systematic review of qualitative research

“…A lack of knowledge of HCV symptoms and transmission were common among PWID Rhodes, Davis, & Judd, 2004;Gyarmarthy et al, 2006;Lally et al, 2008;Ellard, 2007), particularly among those who had not previously been tested . Such gaps contributed to delays in seeking testing (Strauss et al, 2008;Swan et al, 2010;Lally et al, 2008;Southgate, Weatherall, Day, & Dolan, 2005) and individual barriers to testing uptake among PWID, such as fear, were often related to incomplete knowledge about HCV.…”

“…) Experiences of being informed on the outcome of testing were generally poor. Many PWID remained unclear about the meaning of a diagnosis and experienced limited and inadequate information provision by health professionals, leading to substantial gaps in knowledge (Copeland, 2004;Cullen, Kelly, Stanley, Langton, & Bury, 2005;Faye & Irurita, 2003;Khaw et al, 2007;Lally et al, 2008;Rhodes et al, 2004;Southgate et al, 2005;Strauss et al, 2008;Sutton & Treloar, 2007;Swan et al, 2010;Temple-Smith, Gifford, & Stoové, 2004;Tompkins et al, 2005). A policy of not informing 8 PWID of the outcomes of testing ("a no news is good news approach"), as described in two drugs services , also produced anxiety.…”

“…PWID perceived themselves as never being completely safe from, or in control of HCV transmission despite their intentions and actions to reduce risk (Carrier et al, 2005;Davis, Rhodes, & Martin, 2004;Harris, 2009b;Rhodes, Davis, & Judd, 2004;Roy, Nonn, Haley, & Cox, 2007;Sutton & Treloar, 2007;Swan et al, 2010;Wozniak, Prakash, Taylor, & Wild, 2007). However, there were exceptions, with studies noting that the extent to which PWID participated in the 'normalised discourse' was influenced by their situation, social context and personal relationships (Wozniak et al, 2007;Roy et al, 2007;Harris, 2009b).…”

“…(Wozniak et al, 2007, pg. 392) Reactions to a positive diagnosis, primarily among people who were injecting drugs at the time of diagnosis, included being unaware of or indifferent to the meaning of a positive diagnosis, and commonly denial Copeland, 2004;Faye & Irurita, 2003;Swan et al, 2010;Temple-Smith et al, 2004). A diagnosis of HCV (Harris, 2009b;Roy et al, 2007) was not viewed as overly concerning as there was a perception of HCV as a health condition that developed over many years; as such HCV was viewed as inconsequential relative to other disruptions, for example, a drugs overdose.…”

Hepatitis C Virus seroconversion among persons who inject drugs in relation to primary care physician visiting: The potential role of primary healthcare in a combined approach to Hepatitis C prevention

“…Primary health care settings foster continuity of care and the development of familiarity and trust between PWID and their PCP (Hopwood & Treloar, 2013). These factors have been shown to encourage PWID's engagement in the HCV assessment process, as they feel more comfortable seeking and receiving information regarding HCV (Swan, et al, 2010). For PWID who have visited their PCP, timely HCV screening and counseling may have had a positive impact on the adoption of risky injection practices (Aitken, Kerger, & Crofts, 2002;Bruneau, et al, 2014).…”