Understanding the context of risk practices among injecting drug users: implications for hepatitis C prevention.
Habib, Shah E
Introduction
`Risk' has become a keyword in recent sociological studies of
health and related behaviour (Gabe 1995; Lupton 1993; Hayes 1992; Rayner
1992; Douglas 1986), particularly in discourses about HIV/AIDS (Habib et
al. 2000-2001; Rhodes 1997; Bloor 1995a, 1995b; Schiller et al. 1994;
Connors 1992; Pollak et al. 1992). This keyword is also considered
central to the study of the social aspects of hepatitis C (HCV) and to
mapping its determinants. The reason for this is that HCV is a
behavioural disease which progresses mostly throughout an injecting
drug-using population via different interacting patterns and social
relationships. As with HIV, the HCV epidemic and associated risk
behaviour are of profound sociological significance, not only because of
the threat to public health, but also because the onset and course of
the disease are interrelated to social behaviour.
The risk of HCV infection among injecting drug users (IDUs) has
been the subject of inquiry among behavioural and social scientists, and
epidemiologists for many years (MacDonald et al. 2000; Loxley 2000,
1998). Research up until the present has found that high rates of needle
sharing have been a common problem for some IDUs (Crofts et al. 1997).
It is now well known that sharing injecting equipment puts IDUs at risk
of HCV via the transmission of contaminated blood. It is apparent that
when the virus is introduced into a community of IDUs, it spreads
rapidly and infects a large proportion of individuals who inject drugs.
Furthermore, many investigators see IDUs as the epidemiological bridge
to other people because of the various mixing patterns within a
population.
The context of risk behaviours is important to understanding
continued risky injecting practices among drug users (Rhodes 2002,
1995). Previous research shows that sharing injecting equipment occurs
most often among people in a relationship or social network; whether
family, partner or close friend--wherever members are, at least
potentially, mutually oriented to one another and may influence each
other's behaviour (Koester 1996; Bloor 1995b; Barnard 1993; Harding
and Zinberg 1977). These dynamics of the HCV epidemic among IDUs
highlight the importance of a basic knowledge about the context of drug
use and risk practices, as well as of the interaction of drug users in
their naturally occurring social contexts.
With respect to behavioural change in risk practices, numerous
epidemiological studies have been undertaken in the areas of injecting
drug use in response to HCV prevention in Australia (MacDonald et al.
2000; Loxley et al. 1997; Crofts et al. 1997). These studies related to
the onset of HCV appear too frequently to allow us to ignore the social
aetiology of factors that are recognised as more immediately relevant.
If changes in risk behaviour influence the course of HCV, it is
important to understand the factors that influence behavioural change in
general and the onset of risk behaviour in particular. In the absence of
efficacious vaccines against this virus, all health promotion strategies
to prevent the further spread of HCV infection should focus on changing
human behaviour, more specifically injecting behaviour.
No social studies so far have addressed IDUs' risk practices
in relation to HCV transmission in Australia, nor the contexts and
constraints preventing safer behaviour. This paper investigates the
context of HCV-related risk behaviour among IDUs and discusses the
behavioural and social determinants of such practices. The aim is to
examine how risk is constructed in the context of the everyday lives of
IDUs. Although the social `efficiency' of different interacting
patterns within the IDU population is not highlighted here, a focus has
been placed on regular partners to shed light on the ways in which
individuals behave in a risky fashion.
Method
This paper is based on a self-administered survey, conducted by the
author between January and June 1998. The sample consisted of 336 people
who were IDUs or had a history of injecting drug use. Participants were
recruited by a direct approach to persons using needle and syringe
programs (NSPs) and by a mail survey sent to members of the New South
Wales Users and AIDS Association (NUAA) (1) in the Sydney metropolitan
area. The recruitment was conducted through advertising and the
distribution of fliers in needle and syringe outlets.
The majority of data was obtained from clients by staff
distributing needles and syringes, via a self-administered
questionnaire. The staff at respective outlets asked clients to fill-out
the questionnaires while distributing `fits' (injecting equipment).
Potential participants were informed that the purpose of the study was
to ascertain the context of drug injecting and risk behaviour in
relation to the spread of HCV among IDUs. Furthermore, that the study
was anonymous and thus names would not be sought, and that participation
was voluntary. Most of the survey forms were returned during fit
`collection' at the outlets. Of the 336 respondents, 274 persons
were recruited at ten NSPs (2) and one private methadone clinic in the
Sydney metropolitan area. The mailed survey, sent to members of NUAA
with a sealable return-postage prepaid envelope, yielded 62 completed
questionnaires. To obtain a geographically representative sample from
the Sydney metropolitan area, participants were recruited from the
inner, eastern, northern and western suburbs-geographical areas. The
subjects were selected on the basis of convenience rather than
attempting to obtain a random sample of this ill-defined group.
Both qualitative and quantitative data were collected by means of
an anonymous questionnaire, tested in terms of readability and
reliability devised for the purposes of this study. The 36-item
questionnaire was developed using questions specifically about drug use,
HCV knowledge, risk practices, the social context of risk behaviour,
needle procurement, disposal of used needles, and harm reduction
services provided by the NSPs. The survey focused on producing
high-quality, in-depth data on a sample of IDUs. A brief report on the
quantitative aspect of the study has recently been published (Habib et
al. 2001 a). The analysis reported in this paper is based on the
qualitative component of data. In order to retrieve documents and text
segments efficiently, data were coded by the computer package NUD.IST.
Coding and analysis of qualitative information was undertaken on an
ongoing basis throughout the data collection period.
Background characteristics
The sample comprised 336 IDUs, of whom 51% (n = 172) were male, 47%
(n = 157) female and 2% (n = 5) classified themselves as transgender.
Across the whole sample, 88.4% (n = 297) had injected drugs in the two
months prior to participating in the study, while 11.6% (n = 39) had not
injected drugs for years. The most popular substance reported by this
sample was heroin (72%), however many of them using other drags in
conjunction with or in substitution for it.
The age of the respondents ranged from 14 to 64 years, with 17%
younger than 25 years of age (mean age 32). The mean age at which
respondents had first injected or been injected by someone else was 18.5
years. One-third (33.8%) of the sample had completed 10 years of
schooling, 19% had received their higher secondary education (HSC), 15%
were at TAFE, and 20.3% had at least some additional tertiary education,
while 12% had no high school education. Most subjects (64%) were
unemployed or receiving government benefits or pensions, nearly
one-third (32%) were in paid employment (full-time, part-time, or
casual), 3% were students and 1.2% did not respond to this question. The
majority (77%) of the sample were born in Australia, while a
considerable number of the rest were born in other western countries,
mostly from New Zealand (23%) and England (5%). In addition, most of
them had been previously HCV tested (93%), and 66% were HCV positive.
Researching risk: understanding the context of risk practices
The qualitative data presented in Figure 1 focus on a range of risk
behaviours and the context within which these behaviours occur. The
example of dependency and craving is frequently referred to drug and
HIV/HCV literature in understanding risk behaviour. These two concepts
often appear to guide the thinking behind contexts of HCV-related risk.
This is because dependency or craving is known to be associated with
higher HIV/HCV risk-taking behaviour. The effects of drugs can reduce
inhibition, cloud judgement, result in memory lapses, and lead to false
feelings of safety and less concern about HCV or HIV. It comes as no
surprise that IDUs with more dependency on drugs are more likely to
share injection equipment. The link between drug use and HCV is that the
virus is efficiently transmitted while sharing drug injection
paraphernalia, including syringes, needles, cookers or spoons, cotton,
and water glasses.
Figure 1: Risks associated with injecting drug users' lifestyles
Dependency
`When you need a shot you have to have it now, right now because you
are hanging out' (35 year old female HCV positive IDU)
Illusion/craving
`I thought I was re-using my own, but months later on diagnosis
realised it was my friend's. I've got hep C from one of the very
few times I shared, so am now very careful & don't share anything'
(32 year old female HCV positive IDU)
Sharing needles
`Two years ago caught Hep C immediately after one shared
needle' (38 year old female HCV positive IDU)
Sharing with partner
`One week ago I only shared spoon with a fit with my husband'
(33 year old female HCV positive IDU)
`I only do these things with my lover' (23 year old female HCV
positive IDU)
Injecting in prison
`When I was in jail only a used fit was available' (37
year old female HCV negative IDU)
Misconception about HCV transmission
`I didn't realise I could catch Hep C only from sharing
a spoon, filter and tourniquet'
(23 year old female HCV positive IDU)
Unprotected sex
`A week ago or two at home ... my defacto partner had
unprotected sex--I don't know what she has been doing
lately sad eyes' (35 year old male HCV positive IDU)
Other risks/dangers
`Reused own needles/syringes last week, shared needles
10 months ago, and at the beginning of the year when I
got out of jail in 1994 and stayed at a friend's house
and shared razor and syringe' (33 year old male HCV positive IDU)
`Shared needles 4 years ago, shared spoon yesterday, unsafe sex one
month ago, toothbrush week ago, reused my own equipment usually happen
once or twice a month. When I first started using, I shared with my
partner after only rinsing in H2O. Now I never share fits. This was
easily in my using days--we only had one fit, my partner insisted on
using first and I was stupid--naive so I used it after him' (25 year
old female HCV positive IDU)
There are a number of factors associated with sharing injecting
paraphernalia in general that exhibit a greater extrinsic component.
Most powerful among these is having a sexual partner who is also an IDU.
Having an IDU partner increases risk both for intravenous drug use and
sharing of equipment, making risk reduction less likely. In addition to
injecting drug use with sexual partners, sharing of injecting equipment
inside prisons also represented a case example (Figure 1). Prisoners
have a greater chance of getting the HCV virus because of the increased
risk of the virus spreading within their confined community, in
conjunction with their lack of access to sterile injecting equipment.
This is important, given the fact that the proportion of prisoners and
sharing among IDUs in the prison environment is much higher in New South
Wales than in other States and Territories (Australian Bureau of
Statistics 2001).
Figure 1 also shows a case example indicating other intrinsic
factors related to risk-taking across the IDU population. These include
common misconception among persons who believe the transmission of HCV
to be limited in risk while sharing spoons (where blood is not in
contact), tooth brushes or razors. Due to the longevity of the HCV virus
there is a significant risk of being infected by sharing such domestic
items, and the risk increases if there is repeated contact with infected
items. This sort of misconception reflects a deficiency of knowledge
about HCV transmission that could subject these people to risk. The data
presented below on the risks associated with injecting are analysed in
detail, in the context of drug users' lifestyles.
Needle sharing with sexual partners
As mentioned earlier, sharing injecting needles or other related
equipment occurs most among people involved to some degree in
relationships, especially sexual partners. There is evidence in this
sample indicating that sharing needles or equipment occurred between
lovers in a steady relationship. The following section examines the
context of social relationship especially sexual ones, in order to
discover the reasoning which underlies unsafe injecting behaviours.
Thirty-five respondents (12% of the sharing population)--22 women and 13
men--reported a regular sexual and sharing relationship with their
partners where commitment, love and trust were used as the main
justification. Of these people, 15 women and 7 men reported that they
were HCV positive. For many drug injectors in this study, needle sharing
risk behaviour occurred in a steady and monogamous relationship and was
associated with drug users' daily lifestyles. The comments made by
many sharers emphasised their commitment and trust to their partners, or
indicate that they perceive themselves risk free:
Have shared with partner as we both have been using together half
and half always. A way of life. (24 year old male HCV positive
IDU)
Only shared with partners-never used any one else's. (34 year old
female HCV negative IDU)
Shared equipment last week only ever with boyfriend who has
been tested negative for Hep C and HIV. (25 year old female HCV
negative IDU)
Regularly share non-syringe equipment that is fully swabbed and
new syringes only as we mix up in one batch and divide between
partner and I. Did so today--used own syringe once only about 2 yrs
ago. (32 year old male HCV negative IDU)
Only share when one syringe between my husband & myself--weeks
ago. (25 year old female HCV negative IDU)
Shared last week--I only share [with] my sexual partners, equipment
etc. (32 year old female HCV positive IDU)
Recently shared, but usually only with my partner of 14 years, ours
is a strictly monogamous relationship. (27 year old female HCV
positive IDU)
There were indications from some individuals in this study that a
positive HCV test result increased the likelihood of needle sharing, and
that few individuals had knowingly shared with someone whom they knew
was HCV positive. Thus, having a positive HCV test result increases the
likelihood of needle sharing between partners. As indicated by one
injector: `I only share equipment with my close friend and long-term
partner. We are both Hep C positive.' This was substantiated by
another user who was HCV positive: `I do share needles and other
equipment with my friend and girlfriend. We are in a monogamous
relationship. Neither of us have AIDS, but we do have Hep C.' This
may suggest that fear of further infection (in terms of genetic
variation of HCV) was not perceived as a risk factor by users who had
already been infected with the virus. (3) The genetic variations of HCV
are important as they may have an effect on response to treatment
(Crofts, Thompson and Kaldor 1999). It is also important given the fact
that 15 to 22 percent of people infected with HCV can get rid of the
virus within two to six months (Wightman and Toomey 1998).
These findings support the perception that if users are infected
with HCV, they can share injecting equipment with another person who is
also infected with HCV and it will not make any difference. In such
situations, an extreme commitment to share common feelings with steady
partners can be seen to be a function of `accepted risk'. It is
also possible that these users were heavily dependent on drugs and were
not aware of the implications of viral load, or the types of HCV, or
were in the acute (short-term) or chronic (long-term) state of
infection.
Risk in prison settings
Risk behaviours, such as sharing needles and syringes, are often
much more prevalent in prisons. There is a strong connection between
incarceration, or incarceration history, and the risk of getting
blood-borne or sexually transmitted diseases. Since prisoners lack
sterile equipment and the means to disinfect injecting paraphernalia
inside correctional facilities, they cannot take adequate precautions to
act on their risk awareness. Therefore, their behaviour often results in
unsafe practices in terms of the transmission of blood-borne viruses.
Many of the cases in this study (48%) relating to HCV risk behaviour by
IDUs occurred in prison settings. Their general situation was summed up
by one respondent in answer to the question: `Did you ever share
needles/syringes while you were in gaol?': `Two years ago in gaol
and again in gaol late '96. Very hard to get a new fit in gaol
although it was possible for some.'
Situational effects and constraints on safer behaviour
Much of this study's emphasis has been given to exploring the
barriers to safe injecting and changes toward safer behaviour to reduce
HCV transmission. The following examples highlight situations in which
respondents thought unsafe injecting was most likely to occur. According
to the respondents' description at least one or two of the
following conditions accounted for needle sharing.
1. The user was `hanging out' (desire a drug strongly) and was
reluctant to wait to use drugs.
2. The user found it difficult to get a sterile needle at the time
of injecting.
3. There was no needle and syringe program during late 70s, and the
user was unaware of any communicable diseases.
Drug dependency or the state of hanging out
In response to the question `why did you share injecting
equipment', the first condition was typified by the statement of a
woman who was HCV positive: `Because when you are sick you need it
now--right now--straight away'. The next comment is from a young
man who expressed the same urgency to use drugs when asked why he shared
injecting equipment: `Used half a friend's shot of heroin after him
while waiting to score as I was hanging out'.
In some situations the illusion of control was feigned, especially
when the users were impatiently hanging out. Situational effect and
perceived risk might be the major factors in predicting these
behaviours. The following comment by a woman who was HCV positive
suggests that sharing might occur if craving is out of control:
I didn't realise I could catch Hep C from sharing a spoon, filter &
tourniquet. One person was mixing up for everyone. And I wasn't
thinking straight (this person has Hep C). Please find a cure! I
feel that I may have a positive result next test. (23 year old
woman)
Another man underestimated the probability of getting infected by
sharing injecting equipment, although he understood that sharing needles
with an infected person was extremely dangerous: `There is no risk [of]
sharing if blood not in contact--no fits shared, just [a] spoon'.
In addition to the state of hanging out, concern about police harassment was also reported by a few respondents. In one man's words:
`Impatiently hanging out. Also [at] other times worried about police
harassment. What's this where's the dope'?
Difficulty in getting needles or syringes
A wide variety of problems were mentioned by users (40% of the
total sample) concerning access to clean injecting equipment. Transport
was a problem for some respondents who lived in remote rural areas. The
closest source of equipment was liable to be in the nearest town. In
describing these experiences, one man who was HCV positive said: `I
would have had to go for about 20 minutes to 1 hour, the dope may have
been used by then'.
The other major reasons given relating to the difficulty of
obtaining a new fit was the opening hours of exchanges or pharmacies,
and the unavailability of equipment at the time of drug use. Several
respondents made comments on these issues:
Only 1 chemist in my area still sells fits, vending machine only
recently installed, needle exchange at hospital usually out of fits
or says they are ... (42 year female HCV positive IDU)
Have only shared needles with regular partners (not in last year).
Have not been tattooed in last two years or pierced. No clean fits:
no exchange available at time of night. Shared immediately after
regular partner of 8 years. (26 year old male HCV negative IDU)
A man who was HCV positive said he would not share a needle if he
could get new fits from either a vending machine or from a chemist. In
his words: `Only share when there is no way to get to vending machine or
chemist that sells these'. In some cases the unavailability of
equipment during weekends was noted as a difficulty. This was more
common, however, for respondents who lived in country areas. A typical
comment was: `Not enough equipment handed out for the weekend to last
all through'. Despite the unavailability of equipment some
respondents claimed that they had taken some measures for safe
injecting. As one man remarked:
Being fully aware at the risk of BBV's I was not hasty in sharing, I
spent over 1 hour driving around the Gold Coast on Sunday morning
before out of feeling so ill, I attempted to clean someone else's
fit. (30 year old male HCV negative IDU)
Needle sharing prior to the needle & syringe program
Needle sharing experiences prior to the establishment of syringe
distribution programs in New South Wales and other Australian states was
common, and problems in country areas were frequently cited by IDUs as
particular experiences. In describing their experiences in relation to
the questions of past risk practices, one user who was HCV positive
said: `All "yes" answers happened in the late 1970s through to
the middle eighties except for unprotected sex with unknown
partner'. Some were unaware of the consequences of needle sharing
in their early injecting career. As noted by a 41 year old female
injector who was HCV positive: `7 years ago didn't realise the
potential problems. So when one was unavailable thought if cleaned well
it was OK. Also had problems (twice) when walking out of chemist was
stopped by police'. Indeed, several respondents experienced a
difficulty in getting injecting fits early in their injecting careers.
The following are the extracts from some users who had such
difficulties:
Most of my sharing was prior to needle exchanges and the easier
availability of syringes. (40 year old male HCV positive IDU)
When I first started using not many chemists on the central coast
would sell fits 15 years ago. (34 year old male HCV positive IDU)
Chemists in Cairns wouldn't sell fits back in the 80's. I don't know
what happens in Cairns now a day. (42 year old female HCV positive
IDU)
These examples illustrate how HCV-related risk behaviours are
interdependent on the availability of harm reduction services,
particularly with the NSP scheme. For many users, it was difficult to
get hold of new needles and syringes during late 70s and early 80s. Thus
risk behaviour was shaped by the lack of general availability of sterile
injecting equipment.
Discussion
Risk practices are socially patterned and associated for the most
part by close relationships (Rhodes and Cusick 2000; Neaigus et al.
1994). Those respondents who shared needles and syringes were much more
likely to have shared within their immediate social circle (regular
sexual partner, close friend or family members) than with a comparative
stranger (Habib et al. 2001b). A proportion of those shared injecting
equipment within a monogamous social relationship and knew their
partners' HCV status--which documents a version of negotiated
safety. This indicates that a larger proportion are simply accepting the
risk of transmitting blood-borne viruses, and the continuing incidence
of HCV among IDUs is evidence that these risks are real. If the recent
prevalence in self-reported sharing is real and is related to HCV, there
is a very real need to support and enhance further such behaviour
changes through educational efforts targeting all blood-borne viruses.
Some case examples illustrate that IDUs had shared due to the
urgency of injecting, particularly when they were hanging out. This
suggests that risks appear less significant to IDUs at such times.
Experience has taught us that hanging out has a powerful effect on users
to share needles or other injecting equipment in order to alleviate
their craving. Some respondents claimed they could control their chances
of becoming infected, through better judgement, but eventually could not
even remember whether they had used someone's fits or not.
Simultaneous drug use, often characterised by situational factors, might
heighten the risk of rendering conscious control more fragile. Clearly,
sharing used equipment happens and its likelihood is dependent upon
perceived risks and not wishing to disrupt immediate pleasure.
The harm reduction model, retrospectively understood in terms of a
health belief model, can be applied to understand HCV risk behaviour
(Becker 1984). It maintains that when individuals are threatened by
logistic and legal barriers, they resist behavioural changes. Previous
experience shows that IDUs with limited access to sterile needles and
syringes or the methadone maintenance program are at risk of contracting
the HCV virus (Taylor et al. 2000). However, the provision of these
means does not alone necessarily change risky behaviour, as many of the
IDUs in this study, who were regular clients of the NSP or methadone program, were found to be engaged in risk practices. Harm reduction
strategies such as the needle and syringe programs and methadone
maintenance therapy are not, by themselves, enough, even where they
achieve complete coverage. A possible factor in determining health
behaviour outcomes is that young IDUs repeatedly perceive others, not
themselves, to be at risk. This is an area of consideration for policy
makers and service providers of any drug related health intervention.
Some misconceptions were identified in relation to sharing
injecting equipment (e.g. spoons, filters), and sharing razors and
toothbrushes. These sorts of misconceptions imply a deficiency in
knowledge about HCV transmission that could subject these people to
risk. Interventions for these IDUs should include educational programs
to correct their misconceptions about HCV infection and to promote safer
drug use practices. Moreover, the development of skills to negotiate
safe drug use should be an important part of these interventions.
The findings of this study are derived from data based upon
self-reported behaviour. Although the questions asked often required
subjects to write their HCV status and other socially stigmatised
activities, efforts were made to ensure that valid data were obtained.
Subjects were given strong assurances that any information they divulged
would be treated as strictly confidential and anonymous. Other research
(based on a telephone survey) on injecting drug use and HCV has shown
that when subjects are given such guarantees, the data obtained is
reasonably valid and reliable (Van De Ven et al. 1999; Watson 1999).
Conclusion
The word risk remains central to health research, particularly on
the social aspects of HCV. Although it is a key concept in sociology of
health and illness, there is a serious lack of sociological and
anthropological research into the IDU population in relation to HCV
transmission. The social construction of risk behaviour needs further
and more extensive work, in particular social and organisational
contexts (such as the physical environments where injecting occurs) to
discover the meanings and contexts of various behaviours.
This paper has explored the context of risk behaviour related to
HCV transmission among IDUs in Sydney. Findings from these data imply
that social factors are embedded in trusting relationships that may play
an important role in minimising HCV-related risk behaviour. Risk
behaviour, especially sharing needles and syringes with a HCV positive
user, requires closer investigation. Apart from needle sharing, there
are a host of other risks associated with HCV transmission that need to
be explored. Unless these challenges and risks are taken up
successfully, HCV has the potential to have a serious impact on many
IDUs' lives.
Acknowledgments
This study was carried out under the auspices of NUAA, Sydney. I am
grateful to NUAA's former coordinator Annie Madden for her support
and assistance with data collection. Discussions with Susan McGuckin
were especially helpful in clarifying the issues involved. Thanks are
also due to all the respondents for their participation in the study.
Finally, I wish to thank Lester Adorjany for his helpful comments and
editorial assistance on this article.
Endnotes
(1) As the peak drug users' body in NSW, NUAA presents a
state-wide membership of drug users providing the health and social
needs for users, and the majority of its members are either current drag
users or had a history of injecting drug use.
(2) NUAA NSP, Newtown NSP, KRC, Ryde NSP, Langton Centre, St.
George NSP, St. Marys CHC, Foley House, Liverpool Mobile Exchange,
Canterbury HIV Prevention Unit, Kobi Methadone Clinic.
(3) Although the influence of HCV genotype on the severity of
subsequent infection is very difficult to establish, risk of infection
is thought to be influenced by a person's genotype.
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Shah E Habib *
* Dr Shah E Habib, School of Sociology, The University of New South
Wales, Sydney 2052, Australia