Theme: Social Science & Policy Research Year: 2018
Experiences of stigma and discrimination are common for people who inject drugs living with
hepatitis C virus and widely conceptualized by Goffman’s 1963 idea of ‘spoiled identity’. We
explored the impact of experiencing stigma when diagnosed in a vastly different era of care
on participants’ current perceptions of healthcare.
An interpretivist phenomenological approach was adopted to explore participants’ unique
experiences and perceptions. In-depth interviews were conducted with sixteen participants
between Feburary 2015 and August 2016, who were recruited through the Treatment and
Prevention study. The Treatment and Prevention study seeks to assess the feasibility of
treating people who inject drugs living with hepatitis C with direct acting antivirals in
community based settings. Interviews were broad and flexible, focusing on participants’
diagnosis experience and perceptions of wellbeing. Interviews were transcribed verbatim
and analysed thematically.
Most participants (63%, n=10) were diagnosed with hepatitis C ten or more years prior to
interview, when hepatitis C had not yet or only recently been discovered and care was
limited. Participants reported a range of diagnosis settings, including; research studies,
prison and unrelated visits to healthcare providers. Participants reported a generally poor
diagnosis experience, often feeling stigmatised by healthcare professionals. Despite the time
that passed, participants had a strong recollection of diagnosis and continued to express
unease or distrust towards healthcare professionals, assuming they would not receive the
same level of care as non-injectors.
Past experiences of stigma during hepatitis C diagnosis may contribute to continued mistrust
and anticipation of future stigma from healthcare providers. It is important to understand
whether this acts as a barrier to treatment. It will also be important to develop strategies to
engage people who inject drugs in treatment that overcome persisting negative perceptions
of care based on past experiences with hepatitis C diagnosis and care.
Disclosure of Interest Statement:
The Treatment and Prevention Study is an investigator-initiated study supported by a
research grant from Gilead Sciences.