Homeless Injecting Drug Users’ Responses to a Positive Hepatitis C Diagnosis

Homeless Injecting Drug Users’ Responses to a Positive Hepatitis C Diagnosis Charlotte Tompkins Leeds North East Primary Care Trust

Background • Estimated 50 - 80% UK IDUs infected • Rising HCV positive patients at NFA • Homeless drug users: • at greater risk in their drug taking (Fitzpatrick et al, 2000) • at greater risk of blood borne virus infection (Britton & Pamneja, 2000) • more likely to inject in public places (Klee & Morris, 1995)

Qualitative Methods • Purposive sampling • Interview HCV positive homeless IDUs: • Receiving the diagnosis • Response • Impact (Tompkins et al, 2005) • Perceptions (Wright et al, 2005) • Framework analysis • 15 men, 2 women

Testing and Diagnosis • Doctors • Sought testing or knew had been tested • Hospital • Inpatients often unaware blood taken • Unprepared for diagnosis • Concerned how diagnosed • Some discharged unaware of results

“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.” (John, 48)

Initial Responses • Significant emotional impact • Main responses were devastation, shock, anger, disorientation & disbelief • Using drugs muted some reactions • Responsibility and blame • Some violent reactions

“Well I was devastated to be honest with you and I didn’t believe it. I wanted them to check it, and they did, and it came back the same.” (Steve, 31)

Psychological Responses • Fear of premature death • Change in life perception – life taken away • ‘Cursed,’ ‘death sentence’ • Anxiety, especially when ill • Varying attitudes to life with hepatitis C

“At the end of the day if I had the bottle I’d top myself to be honest. That’s how I feel. If I had the bottle I would, but I haven’t got the bottle so I wont do it.” (Dan, 26)

“I thought I was a gonner, 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.” (Luke, 31)

“Every time I get ill or something I think the worse, whereas once upon a time I didn’t think because that was before I had the hep C.” (David, 37)

Social Responses • Concern about transmission to others • past and future relationships • children • when injecting with other IDUs • Negative experiences and stigma • other IDUs • community • healthcare staff • Disclosure • attitudes varied, based on experiences • anxiety

“I thought it was only right they (other injectors) should know but I only did that about twice and then it got around town.” (Sally, 24)

“If I’d have passed it to her (ex girlfriend), I don’t know how I’d of coped with it. You know to be honest I don’t know what I’d have done or how I’d have dealt with it.” (Dean, 45)

“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.” (Jimmy, 33)

Behavioural Responses • HCV affected injecting practices, especially when with others • Injecting with others often resulted in disclosure • Disclosure meant a shift in responsibility • Despite some high risk practices, users tried to minimise risks to: • themselves • others

Minimising Injecting Risks • Asking about infections if using with others • Not let others use their used equipment • Distributing spare/unused equipment • Not wanting needles back after use • Cleaning injecting equipment • Using alone

Minimising risk was complicated by: -Trusting people to tell the truth -Rattling and withdrawal -Ineffective cleaning methods

“If you say, have you got AIDS or hepatitis have you, or anything?’ and they say, ‘no,’ then you’ve got to trust them, haven’t you?” (John , 26)

“I cant be fairer than tell them and if they still want to go ahead and do it, that’s their problem.” (Dean, 45)

“Ten o’clock in the morning and there’s nowhere, there’s no way you can go to get brand new pins and you’re rattling, you don’t care, you don’t think about it, you think, ‘I’ll use your pin after you, I’ll flush it out with cold water and it’ll be alright.’” (Luke, 31)

“In my space I’m not bothered how I do it (inject) but if there’s someone else there I care about them people catching it (hepatitis C) from me cos I don’t wanna be held responsible for passing a disease onto them.” (Jimmy, 33)

Knowledge • Varied greatly • Generally improved on diagnosis, especially with relation to transmission • Important gaps in knowledge • Sexual transmission • Prevention and treatment • Clearing the virus

“I don’t know if it’s a virus or a bacteria or whatever, all I know is it damages my kidney and your kidney’s one of the only parts of your body, vital organ anyway, which will repair itself, but hep C just keeps knocking at it and knocking at it and in the end I will get cirrhosis and get killed.” (Craig, 36)

Discussion • Some behaviour change after diagnosis • Hardly any direct needle sharing, however indirect sharing • Homeless IDUs devolved responsibility for preventing HCV transmission • Unsafe and unhygienic practices have implications for BBV transmission and health complications from injecting • Increased hours of needle exchange may help change unsafe behaviour

Practice Implications • Don’t assume HCV diagnosis is understood • Understand possible responses to diagnosis • Offer post-test discussion and counselling, even if years since diagnosis • Repeat testing to confirm if infected • Explain HCV treatment options if and when appropriate • Be sensitive to possible long term psycho-social responses & physical symptoms

Provide ongoing support • Reiterate harm reduction messages • Explore HCV support groups • Provide accurate information to IDUS: • Most effective cleaning of used equipment • HCV in general • HCV transmission from injecting equipment • Encourage HBV vaccination to reduce co-infection

References • Britton, J. & Pamneja, T. (2000) Homelessness and Drugs: Managing Incidents. DrugScope, London • Fitzpatrick, S. Kemp, P. & Klinker, S. (2000) Single Homelessness – An Overview of Research in Britain. The Policy Press, London • Klee, H. & Morris, J. Factors that Characterise Street Injectors. Addiction, 1995: 90;837-841

Tompkins, CNE., Wright, NMJ. & Jones, L. Impact of a Positive Hepatitis C Diagnosis on Homeless Injecting Drug Users. British Journal of General Practice, 2005: 55;263-268 • Wright, NMJ., Tompkins, CNE. & Jones, L. Exploring Risk Perception and Behaviour of Homeless Injecting Drug Users Diagnosed with Hepatitis C. Health and Social Care in the Community, 2005: 13(1);75-83

c.tompkins@leeds.ac.uk 0113 3436966

Homeless Injecting Drug Users’ Responses to a Positive Hepatitis C Diagnosis