1. Bridging the Streets and the Institutions:
The role of Ethnographic research in HIV
prevention among people who use drugs
Jean-Paul C. Grund
CVO—Addiction Research Centre,
Utrecht, The Netherlands

2. Presentation Overview
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Research traditions
Research on people who use drugs
Injecting drug use and HIV infection
Qualitative research of people who use drugs
Case studies
Conclusions

3. Research traditions
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Quantitative VS. Qualitative approaches
The science of numbers and the science of
words, images and emotions
Desk science or street science
Importance of “Research Alliance” with community
studied
 Key informants, community field workers
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Relevance in various policy areas
Status and funding

4. How to lie with statistics…
“Kurt and Vicki Oliver had
great credit, long-term
employment and excellent
assets and income. So how
did they almost come to lose
their home to foreclosure? It
was a bad mortgage from a
fast-talking broker.”

5. Research on people who use drugs
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Successful interventions require a thorough and multiangle social scientific understanding of the problem at
hand, but…
Mostly institution based research
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Quantitative studies of treatment populations
Limited relevance outside walls of institution: The “Clinician’s
Bias” (Cf: Fiddle, 1967)
Skewed epidemiology and perception of drug use and drug users
Little interest in scientific community before onset of HIV
among people who inject drugs (and are not in treatment)
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Not much to gain in terms of status and funding

6. Qualitative research among injecting
drug users and other hidden populations
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“Good quantitative researchers go to Heaven.
Good qualitative researchers go Everywhere”
Hidden (out-of-treatment) populations
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Vulnerable populations: people engaging in behaviors
considered “deviant”—(injecting) drug users, sex workers,
LGBT
Stigma and discrimination; Criminalization
Distrust of institutions and researchers
Rationale for keeping ‘things’ covert and underground
Case studies

7. And then there was HIV…
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The onset of HIV among injection drug users (IDUs)
in the early 1980s: Scientific Panic
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Increasing number of IDUs presenting at medical clinics with
symptoms of “GRID”
HIV was seen as a “gay disease”
The apparent link between HIV and injection drug use was
not easily understood. What mechanisms were responsible
for HIV transmission in this (at the time, atypical)
population?
Early ethnographic observations of people actually
injecting drugs revealed the mechanisms behind the link
between HIV and injection drug use.

8. Understanding the link between drug
injecting and HIV, I. Equipment Sharing
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Early ethnographic observations showed:
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High levels of sharing many different types of injecting
equipment.
Scarcity of injecting equipment – how to change that? (Laws
were a problem.)
Social norms at work that encouraged sharing – how to
change that?
High levels of fear & concern among IDUs about HIV and
(how to protect) their health.
High levels of distrust among IDUs, as well as an eagerness
to learn about HIV.
The responses of IDUs in the community shattered the
researchers’ own stereotypes about drug users in
general.

9. The link between drug injecting and HIV, II.
Syringe-Mediated-Drug-Sharing
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Frontloading & Backloading
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A serendipitous finding…
Relevant to epidemiology
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Subsequent research documented SMDS among IDUs around
the globe
Important driver of HIV epidemic in fSU countries
Relevant to Prevention: Not the needles, but the drugs
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Social context of sharing drugs and collective use of injecting
equipment
Social (ritual) meaning vs. instrumental utility and scarcity
Existing mechanisms of social support and economic exchange

10. The link between drug injecting and HIV, III.
“Other issues to consider” (AKA drug policy)
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Drug, Set & Setting (Norman Zinberg)
Rippin’ & Runnin’ (Michael Agar)
Methadone, Wine and Welfare (Preble & Casey)
A “hierarchy of risk” (Margaret Conners)
Women on Heroin (Marsha Rosenbaum)
Drug use and HIV risks among the Roma (Grund, et al.)
The Risk Environment (Tim Rhodes)
“Enemy Environment”
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“Junkie Jogging”, Frankfurt aM, late 1980s; Carrying injecting
equipment (USA, Russia)
The “Blood Myth” — Debunking misinformation in Russia/fSU

11. Leading the response:
Intervention development
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Community based outreach: “Reach and Teach
Bleach”
Needle exchange (1981: Rotterdam Junkie
Union; Gerry Stimson, UK)
From 1-4-1 to “secondary” exchange and
distribution
From provider driven to peer driven
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Example: the HADON NSP in Rotterdam, NL, mid
1980s.

12. The HADON NSP & Client Zero
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First period (<1986): only needle exchange at the office and
during street outreach: the clients highly appreciated the needle
exchange, but we felt that we were only serving a small
proportion of the IDUs in area.
1986: Client Zero (CZ)
CZ was a relatively new, but regular client of the needle
exchange; one day he came to exchange and told me that many
other IDUs inject at his apartment.
CZ and subsequent clients with similar stories made us realize
that we had to find ways to get clean needles where these were
needed most, at those places where IDUs meet to inject drugs.
Serious reconsideration of needle exchange rules; from 1-4-1
exchange to distribution… …“Collective Exchange”

13. Introducing “Collective Exchange”
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“Collective exchange” was experimentally
initiated to determine if outreach component of
the program could be extended and improved.
Examined whether visitors could be motivated
to both distribute new needles to their IDU
friends and collect used needles.
Turning them from service consumers into
providers of services to their peers, stimulating
them to take more responsibility for their own
and their peers’ health.

14. Where have all the needles gone?
Karel agrees to let Jerry take a shot at his place. Jerry
wants to shoot up cocaine. He puts his syringe on the
table and asks Karel for a spoon. Karel asks, "Is that an
old spike you want to use?" Jerry replies, "Well, old, I've used
it one time before, so it's still good for use." Karel says, "I've got
some new ones left from HADON," and hands one over to
Jerry, asking him, "Do you want some more for tonight or the
weekend?" Jerry replies, "If you can spare them, I'll take some
with me." Karel gives him four.
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At present, secondary exchange is the primary mode of
needle exchange in the US (Des Jarlais et al., 2009).

15. Drug Use Characteristics of Russian
Syringe Exchange Participants N = 1,076
N. N.
Pskov R-N-D St. Petersb. Volgograd
N = 236 N = 201 N = 199
N = 221
N = 219
Age First IDU1 (Mean/SD)
Total
N = 1,076
19 (4)
21 (5)
21 (5)
18 (3)
19 (4)
20 (4)
< 3 years
3+ – 6 years
6+ – 10 years
>10 years
22
33
33
12
47
31
10
12
18
22
25
35
43
27
16
14
26
41
26
6
30
32
23
15
Drug Injected1,2 (%)
Homemade opiates
Powder Heroin
Amphetamine
83
47
9
15
53
61
84
5
24
6
96
9
21
90
4
42
59
20
Reported Secondary Exchange (%)
40
46
40
43
48
44
Years Injecting1 (%)
1 N differs because results are derived from intake questionnaires that linked with risk assessment questionnaires, only, so that N
for
Nizhny Novgorod = 165; N for Pskov = 153; N for Rostov-na-Donu = 109; N for St. Petersburg = 56; N for Volgograd = 160;
and the total N for the five programs = 643.
2 Percents may sum to > 100; more than one response may apply.
Almost half of Russian Syringe Exchange
Participants reported Secondary Exchange (4048%), whether the program encouraged it or not.

16. From “provider-client” outreach…
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Qualitative studies documented successes but also
limitations to traditional (professional) outreach model
(e.g. Broadhead & Fox).
The traditional outreach model:
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Relies on hiring former or current drug users, or people with
“street credentials” to serve as outreach workers
Assumes a Provider-Client Relationship with IDUs: outreach
workers become new “providers” who begin to work with
their peers by turning them into “clients”
OWs venture out into targeted areas, seek to identify IDUs,
develop trusting relationships with them, educate them in the
community, give out risk reduction materials, and recruit
IDUs into services

17. Problems with traditional outreach
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Qualitative study of traditional outreach (Broadhead &
Fox) in San Francisco, USA
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Observed outreach workers in different US cities
Main findings: Traditional Outreach projects tend to
stagnate and exhibit high levels of mal- and
nonperformance by outreach workers
They found:
“Good
Organizational Reasons For
Bad Organizational Performance”

18. Why Traditional Outreach Projects
Performed Poorly: Agency Problems
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Low salaries
Problematic supervision
Adverse selection problems
Occupational risks of outreach in drug scenes
Black Market opportunities
Work-related monotony and powerlessness
Identity conflicts (e.g. harm reduction
approaches vs. religious beliefs)
High staff turnover
all of the above in combination

19. But, IDUs responded positively
to outreach projects!
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Volunteered and helped outreach workers
Introduced outreach workers to new IDUs, and
eased IDUs distrust of them
Revealed the drug scene to outreach workers
Helped outreach workers distribute risk
reduction materials (bleach, condoms)
Responded to interviews and education sessions

20. Remarkable results and useful insights
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These and other studies demonstrated dramatic
decreases in risk behavior.
Revealed that IDUs were far more capable and
responsive to interventions than researchers previously
thought.
Demonstrated that IDUs could play active roles in
helping themselves and others.
Results dovetailed with research mentioned above:
IDUs are not isolated individuals, but part of larger
networks of users, within a(n underground) community
with defined social rules and standards of conduct.
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The “scene” — “secret societies” (Cf. MSM & sex work)
(Howard Becker, Insiders)

21. … to peer driven prevention?
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Researchers and community activists (in many places)
started thinking about developing prevention models
that rely on active drug users to carry out core outreach
tasks
“Why not develop a model that works with drug users as colleagues
rather than as “sick” people, “criminals,” or “disabled” people,
because IDUs demonstrated that they were more capable,
responsive, and willing to work than previously recognized.”
(Robert Broadhead)

22. Novel approaches relying on peer
involvement
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“Fellow network” approaches
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Secondary needle exchange
Overdose prevention & naloxone distribution
Respondent driven sampling (RDS)
Peer Driven Intervention (PDI)
Peer support approaches are in line with the
International Guidelines on HIV/AIDS and Human
Rights (United Nations, 2006)
“The most effective responses to the epidemic grow out of people’s
action within their [own] community and national context”
(UNAIDS/IPU 1999).

23. The Peer Driven Intervention (PDI)
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Collaboration between ethnography and mathematical
sociology (Broadhead & Heckathorn)
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Strong fundament in both “the trenches” and theoretical
sociology—Group mediated social control (GMSC)
Chain-referral model based on a coupon system of referral
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Relies on those with the best contacts to recruit and educate drug
users: active drug users
Relies on IDUs to carry out the core activities of outreach work
Service recipients also get the opportunity to work as service
providers—working with their “clients” as colleagues
Offers nominal rewards for successfully completed prevention
tasks (All IDUs are offered the same opportunity)
In relying on “everyone,” the PDI is always potentially working:
it relies on many to contribute a little and there are no holidays or
take days off

24. Eight program factors that
promote behavioral change
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New Information
Skills building
Interaction
Peer pressure
Norms
Rewards
Repetition
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In a PDI all of the above occur in combination
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With IDUs accessing and educating their peers, a PDI is
couched in terms that is always culturally appropriate to
the population targeted

25. Discussion
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Qualitative research in drugs/HIV policy and intervention
development
A bridge between the (research) institutions and the streets
Methods developed by ethnographers, such as the PDI
and other fellow network approaches towards HIV
prevention target populations “sentinel” to succesful HIV
prevention:
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Out-of-treatment IDUs/those unreached by other health services
Subpopulations with increased levels of risk behaviour and those
avoiding regular service participation
Need for capacity development on qualitative research in
many countries

26. Thank you!
Thanks to Robert Broadhead for some of the presented data.

27. Contact
Jean-Paul Grund, PhD
PI PROZE
CVO—Addiction Research Centre
T: +31 30 238 1495
F: +31 30 238 1496
E: jpgrund@drugresearch.nl
W3: www.drugresearch.nl/