Transcript Injecting Drug Use, Homelessness and Hepatitis C

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 psychosocial 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 coinfection
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;263268
• 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
[email protected]
0113 3436966