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

Presentation Overview

Research traditions

Research on people who use drugs

Injecting drug use and HIV infection

Qualitative research of people who use drugs

Case studies

Conclusions

Research traditions

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

Relevance in various policy areas

Status and funding

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.”

Research on people who use drugs

Successful interventions require a thorough and multi-

angle social scientific understanding of the problem at

hand, but…

Mostly institution based research

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)

Not much to gain in terms of status and funding

Qualitative research among injecting

drug users and other hidden populations

“Good quantitative researchers go to Heaven. Good qualitative researchers go Everywhere”

Hidden (out-of-treatment) populations

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

The onset of HIV among injection drug users (IDUs) in the early 1980s: Scientific Panic 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.

And then there was HIV…

Understanding the link between drug

injecting and HIV, I. Equipment Sharing

Early ethnographic observations showed: 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.

Frontloading & Backloading

A serendipitous finding…

Relevant to epidemiology

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

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

The link between drug injecting and HIV, II.

Syringe-Mediated-Drug-Sharing

The link between drug injecting and HIV, III.

“Other issues to consider” (AKA drug policy)

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”

“Junkie Jogging”, Frankfurt aM, late 1980s; Carrying injecting

equipment (USA, Russia)

The “Blood Myth” — Debunking misinformation in Russia/fSU

Leading the response:

Intervention development

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

Example: the HADON NSP in Rotterdam, NL, mid 1980s.

The HADON NSP & Client Zero

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”

Introducing “Collective Exchange”

“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.

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.

At present, secondary exchange is the primary mode of needle exchange in the US (Des Jarlais et al., 2009).

Drug Use Characteristics of Russian

Syringe Exchange Participants N = 1,076 N. N.

N = 236

Pskov

N = 201

R-N-D

N = 199

St. Petersb.

N = 221

Volgograd

N = 219

Total

N = 1,076

Age First IDU1 (Mean/SD) 19 (4) 21 (5) 21 (5) 18 (3) 19 (4) 20 (4)

Years Injecting1 (%)

< 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

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 (40-48%), whether the program encouraged it or not.

From “provider-client” outreach…

Qualitative studies documented successes but also

limitations to traditional (professional) outreach model

(e.g. Broadhead & Fox).

The traditional outreach model:

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

Problems with traditional outreach

Qualitative study of traditional outreach (Broadhead &

Fox) in San Francisco, USA

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”

Why Traditional Outreach Projects

Performed Poorly: Agency Problems

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

But, IDUs responded positively

to outreach projects!

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

Remarkable results and useful insights

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. The “scene” — “secret societies” (Cf. MSM & sex work)

(Howard Becker, Insiders)

… to peer driven prevention?

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)

Novel approaches relying on peer

involvement

“Fellow network” approaches

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).

The Peer Driven Intervention (PDI)

Collaboration between ethnography and mathematical sociology (Broadhead & Heckathorn) Strong fundament in both “the trenches” and theoretical

sociology—Group mediated social control (GMSC)

Chain-referral model based on a coupon system of referral 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

Eight program factors that

promote behavioral change

New Information

Skills building

Interaction

Peer pressure

Norms

Rewards

Repetition

In a PDI all of the above occur in combination With IDUs accessing and educating their peers, a PDI is

couched in terms that is always culturally appropriate to the population targeted

Discussion 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:

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

Thank you!

Thanks to Robert Broadhead for some of the presented data.

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/