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CLINICAL PRACTICE

Behavioral Aspects of HIV Prevention and Care in Indonesia:


A Plea for a Multi-disciplinary, Theory- and Evidencebased Approach
Elmira N Sumintardja*, Lucas WJ Pinxten**, Juke R.L. Siregar*, Harry Suherman***,
Rudy Wisaksana****, Shelly Iskandar*****, Irma A Tasya***, Zahrotur Hinduan*,
Harm J. Hospers**

* Faculty of Psychology, Padjadjaran University. Jl. Pasirkaliki no. 190, Bandung 40151, Indonesia.
** Department of Work and Social Psychology, Faculty of Psychology and Neuroscience, Maastricht University,
Maastricht, The Netherlands. *** Health Research Unit, Faculty of Medicine, Padjadjaran University/Hasan Sadikin
Hospital, Bandung, Indonesia. **** Department of Internal Medicine, Faculty of Medicine, Padjadjaran University/
Hasan Sadikin Hospital, Bandung, Indonesia. ***** Department of Psychiatry, Faculty of Medicine,
Padjajaran University/Hasan Sadikin Hospital, Bandung, Indonesia.
Correspondence mail to: lpinxten@yahoo.com.

ABSTRACT
Projections estimate 1,000,000 HIV infected by 2015 in
Indonesia. Key behaviors to HIV prevention and care are
determined by a complex set of individual/ environmental
factors. This paper presents empirical data, local evidence
and theoretical concepts to determine the role of social
sciences in HIV prevention/care.
Injecting Drug Use (IDU) is a social and very risky
activity: 95% injected in the presence of peers and 49%
reported needles sharing. 82% of IDUs do not use condoms
consistently. Poor adherence to ARV treatment is related to
a complex set of, mostly behavioral, factors beyond effective
influence by standard professional skills of medical staff.
Meta-analysis indicated that about 1/3 of the variance
in behaviour can be explained by the combined effect of
intention and perceived behavioral control, the two
cornerstones of the Theory of Planned Behavior (TPB). It is
advisable to adapt TPB in the light of the Indonesian
context.
Current theories of behavior and behavior change give
professionals of all disciplines, working in HIV prevention
and care, effective tools to change behavior and to improve
HIV prevention and access & quality of HIV care.
Key words: VCT, ARV adherence, injecting drug use, AIDS/
HIV, theory of planned behavior, intervention mapping.

INTRODUCTION

According to UNAIDS and WHO estimates, in Asia


around 5 million people are living with HIV (range: 3.7
million6.7 million). Some Asian countries (Thailand and
Cambodia) managed to halt the HIV epidemic resulting
in an overall declining trend of new infections: from
450,000 in 2001 to 440,000 in 2007.1 Injecting drug use
(IDU) has been identified as a major cause of the
current expansion of the HIV epidemic in Asia.2,3
During the first two decades of the HIV pandemic,
Indonesia was relatively unaffected by the virus.4,5 It
was not until 1999 when a sharp rise in HIV infection in
several subpopulations was recorded. The groups most
affected were intravenous drug users (IDUs) and Sex
Workers (SW) and their clients. An anonymous sentinel
surveillance in Indonesia revealed that in 1999 16% of
IDUs were HIV-infected. This figure rose to 41% in
2000 and to 48% in 2001. In urban areas, HIV-transmission through needle sharing showed an eightfold increase
from 1997 to 2003.6
Current estimates of total HIV infections in
Indonesia range between 190,000 to 400,000 in a nation
of 220 million inhabitants, while prevalence rates of HIV
among different IDU subpopulations in Jakarta range
from 18% to over 90% 7-10 and unsafe injecting
practices are estimated to account for over 75% of all
new HIV infections.9,11 Around the year 2000, approximately one quarter of IDUs in Bandung, Jakarta and
Bali were reported to have engaged in unprotected sex
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with commercially sex workers (SW) in the previous


year.3,10,13 After Jakarta and Papua province (where the
HIV epidemic is primarily heterosexually driven), West
Java is the third worst affected province having an
estimated 22,000 IDUs of which up to 52% are HIVpositive and 21% incarcerated.14,15
Unlike other countries, Indonesia has a quite unique
HIV epidemic: HIV patients mostly (ex-) IDUs and
their spouses are young: 40% of nationally reported
AIDS cases were between 15 and 24 years16 and were
rather well educated: in Jakarta 73% of the IDUs17 had
higher education (high school or beyond) while in
Bandung about 70% had finished senior high school, and
14% of the IDUs had a university degree.18 In the
Bandung RSHS methadone clinic, about 42% of the
patients have a senior high school degree and 31% of
the patients have an academic degree.19
According to the Indonesian National Narcotics
Board, approximately 1% of Indonesias total population
use intravenous drugs, resulting in a concurrent HIV and
IDU epidemic, fuelling through sexual contact between
injectors and non-injectors the Indonesian HIV
epidemic.9,12,20 Unless effective harm reduction targeted
at the most at-risk groups is put in place including clean
needle distribution and adequate condom distribution
scenario studies project at least 1 million HIV infections
by the year 2015.21
On the biomedical front, also in Indonesia, much has
changed in the last decade: multi-drug antiviral (ARV)
regimens have become available, more convenient, less
toxic and, due to generic and off-patent production with
pharmaceutical subsidies and government distribution to
148 designated ARV treatment hospitals, less expensive.
In Bandung, this development is paying off: compared to
the current national mortality figure of 20%22, the
Bandung mortality rate now is 7% one year after
starting ARV.19
Despite this progress, huge challenges still remain in
the field of behavioral aspects of HIV prevention and
care in Indonesia. It is not who a person is but what he
or she does that determines whether one exposes
oneself and/or others to HIV.(after Fishbein, 2000)
Behaviors considered key to HIV prevention and
care are determined by a complex set of individual and
environmental factors. For practical reasons and in
order to gain a better understanding of these individual
and environmental factors, behavioral sciences use
theoretical concepts to model, determine and explain
cognitions, barriers and environmental conditions that
affect behavior of (ex-) IDUs, and other groups at risk,
and their access to and use of services. The
development of HIV prevention and care should be a
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well planned evidence and theory-based activity in


order to be effective. 23-25 Especially the use of
behavioral models facilitates all professionals working
in the HIV field to critical analysis of the situation of the
individual, group or the environment in order to develop,
implement and evaluate appropriate and effective
prevention and care interventions.
This paper presents empirical data and theoretical
concepts to determine the role of behavioral sciences in
HIV prevention and care in Indonesia and covers the
following chapters: 1. analysis of the situation/problem;
2. analysis of the behavior at individual and environmental
level (e.g. risky injecting behavior, condom use),
3. analysis of the determinants of the behavior (e.g. group/
peer pressure, self-efficacy), 4. development and pilot
testing of the intervention (e.g. school-based prevention
curriculum, counseling), and 5. implementation of the
intervention (e.g. at schools or at ARV clinics). We will
follow the steps of the Intervention Mapping25 method
to discuss empirical data and theoretical concepts
related to behavioral aspects of HIV prevention and
care, such as: knowledge, attitudes, social norms, risk
perception regarding HIV-related risk behaviors, and
perceived skills related to risk reduction behaviors and
ARV treatment (safer sex; safe injecting, adherence to
ARV treatment).
EVIDENCE ON BEHAVIORAL ASPECTS OF SEXUAL
AND DRUG RELATED RISK BEHAVIORS SUCH AS VCT,
ARV UPTAKE AND ARV ADHERENCE

Next, we will present data of sexual and drugs related risk behaviors among IDUs, leading to health hazards like HIV or HCV infections, as well as local behavioral evidence related to the uptake of VCT, ARV
treatment and adherence.
Sex-related Risk Behavior Among IDU

A 2006 in-depth study of 321 active IDUs in Bandung


revealed that about 15% had a steady partner, that 47%
bought sex in the last year, and that 89% ever had
casual sex partners. Of all respondents, 37% never used
a condom in any sexual contact, 51% did not use a
condom during the last sexual intercourse, 45% reported
to have had unprotected sex with SW the yera before.
Of the 321 surveyed IDUs only 10% of this group had
been tested for HIV.26 According to the 2007 national
bio-behavioral survey, 82% of the Bandung IDUs did
not use condoms consistently and 45% do not use a
condom when having sex with a sex worker.27
Drug-related Risk Behavior Among IDU

The above mentioned 2006 Bandung survey further


showed that the average age of this specific survey

Vol 41 Supplement 1 July 2009

sample was 19 years. The mean age of first illicit drug


use (including alcohol, mushrooms, inhalants, codeine,
ecstasy, marihuana, tranquilizers, cocaine and
amphetamines but excluding tobacco smoking and
injecting drug use) was 16 years and first injection drug
use was at 19 years. Individual risk behavior often is
influenced others: 95% of the IDUs injected in the
presence of peers in 95% of cases and high risk
injecting behavior was common: 49% of IDUs reported
needle sharing in the previous month.18,26,28
Given the high HIV-prevalence and the high
prevalence of risk behaviors among IDU, there is
consensus that this IDU-driven HIV epidemic will
gradually spread to other non-injecting populations, like
partners of IDUs and sex workers.29,30 For example,
we see a steady increase of women in the Bandung
patient group attending the HIV clinic of Rumah Sakit
Hasan Sadikin, most of whom are (ex) spouses of IDU),
who became infected through sexual intercourse.31
Uptake of VCT

Voluntary Counselling and Testing (VCT) is a method


whereby clients or patients with risk behavior (like IDUs
and Sex Workers) are informed about the risks of being
HIV-infected and stimulated to take an HIV test. VCT
is a well proven and cost effective way to increase
knowledge of HIV transmission, to promote behavioral
change, and to stimulate the uptake of health care
services like ARV treatment.32-34 Despite the increase
of VCT testing sites in Indonesia it is estimated that as
many as 70% of the most at risk populations have not
yet found their way to a VCT site.3 Also in Bandung,
VCT is the entry point to HIV services. Ideally VCT
should be accessed before people develop opportunistic
infections or other signs of a diminished immunological
status, but the year before most patients in the Bandung
RSHS decided to go for a VCT test only after being
diagnosed with advanced stage of HIV infection
(median CD4 cell count=193mm2/cell and majority
being advised by health care workers to go for VCT in
the hospital.35
Difficulties with VCT utilization have also been
reported in other countries. Ugandan researchers
evaluating home-based VCT (health workers going door
to door) stated that besides inconvenience of the testing
site, fear of stigmatization and emotional vulnerability and
lack of confidentiality: receiving results in a public
facility (hospital/health centre) were the most common
explanations for the relative popularity of home-based
VCT. 36 Dutch research points out that the main
reason for not taking an HIV test among Men who have
Sex with Men (MSM) was fear of a positive test result

Behavioral Aspects of HIV-prevention and Care in Indonesia

and the perceived psychosocial consequences of this test


result.37 Recent Bandung research points out that IDUs
do not go for VCT because of perceived lack of confidentiality offered at the VCT sites, the costs related to
testing (travel and additional service costs) and perceived
lack of benefits of VCT.38
Access and Adherence to ARV Treatment

As a result, the well education IDUs have a rather


good knowledge on HIV/AIDS.27 But barriers like drug
addiction and/or lack of knowledge about opioid
substitution or ARV treatment probably prevent about
75% of current and former Bandung IDUs having tested
HIV+, to accessed addiction- ARV treatment.39
Access to the Bandung ARV clinic requires, like in
all Indonesian ARV treatment sites, that drug users stop
injecting, abstain from drugs or join a substitution
service. In addition, adherence to ARV treatment is
expected. In the case of ARV for HIV-infection
adherence should be very high (i.e. at least 95% of the
doses taken, and on prescribed times). High adherence
is essential for optimal suppression of the virus load.40,41
Lower adherence is considered as medication failure
which may result in virological failure and ARV drugs
resistance. More recent, research however, indicates that
lower adherence levels (lower than 95%) may achieve
durable viral suppression.42 Poor adherence is common
in short-term treatment regimens like antibiotic courses.43
Reaching and maintaining appropriate adherence levels
to ARV treatment is quite a challenge because ARV
treatment is meant to be life-long. Poor adherence to
ARV treatment is related to a complex set of factors:
regimen related factors like the fit of a complex
regimen to the day to day routines, psychological and
physical adverse/side effects, of the treatment itself44,
socio-economic factors like lack of social support from
family and friends45, patient related factors like: low
self-efficacy and lack of self-control of the requirements
of the ARV treatment, psychological distress,
depression, inadequate confidence in treatment and
providers, knowledge, perceived norms (patients
perception of what others expect him to do) perceived
benefits of treatment related to health outcomes and other
values (being a good parent/partner), forgetfulness,
alcohol and drug use, stigma and fear of discrimination,
poor literacy and cognitive impairment,44,46,47 health
system related factors like lack of clear instruction, inadequate knowledge about relation between adherence
and resistance and poor follow-up and feedback,44 and
condition-related factors like low viral load and
symptoms of HIV like wasting and opportunistic
infections.
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Acta Med Indones-Indones J Intern Med

International research indicates that patients with an


IDU history on ARV treatment, have a lower treatment
adherence level and resulting in poor response rate.48,49
However, ongoing research in Bandung cannot confirm
this: ex-IDU patients on both methadone substitution and
ARV are doing at least as good (in terms of self
reported adherence, and viral/immunological response)
as patients without an IDU history that are on ARV
treatment only.29 It would be worth while relating the
self-reported adherence to a gold standard like electronic
pill registration devices in order to validate the self
reported adherence.
THEORY OF PLANNED BEHAVIOR: A PRACTICAL
MODEL TO ANALYZE COMPLEX BEHAVIOR

There is a general recognition that behavioral


sciences, theory and research can play an important role
in protecting and maintaining public health.51 However,
a recent review indicated that most of the many
behavioral interventions developed in the HIV field,
neither use an evidence-based approach nor draw
explicitly on theories of health behavior. The review
further showed that the Theory of Planned Behavior
(TPB) had its limitations but was one of the most used
and useful theoretical models to determine factors and
mechanisms influencing various HIV related
behaviors.52 A meta-analysis indicated that about 1/3 of
the variance in behaviour can be explained by the
combined effect of intention and perceived behavioral
control, the two cornerstones of the TPB.53
The core of TPB, as illustrated in Figure 1, is the
concept that attitude, subjective (social) norms and
perceived behavioral control (which is similar to
Banduras self-efficacy concept) are the determinants
of motivation, which is usually assessed as the intention

to perform a specific risk or health behavior.54 As an


illustration: the attitude toward learning ones HIV
status is primarily a function of the beliefs about positive
and negative consequences of knowing ones HIV
status. Despite some people knowing about VCT and
the availability of free and easy accessible VCT
centres, they still have certain beliefs (mostly influenced
by others) that influence the balance of perceived
positive and negative consequences of a possible HIV+/
HIV- result of the test. Herewith, the TPB recognizes
that individuals are embedded within interpersonal
relationships, organizations, community and society, and
addresses socio-cultural aspects and incorporates
factors outside the individuals control (like peer
pressure or the opinion of an other important) that may
influence the intention and the actual behavior. As a
result, individuals HIV preventive behaviors, such as
taking up VCT services (in order to know their HIV
status), is a function of individuals cognitions and of the
environment they live in.(24) In Bandung, most people
going for a VCT in RSHS only went for VCT after a
physician or other health care worker told them to check
their status, which suggests negative attitudes towards
testing.35
Subjective or social norms refer to the perceptions
of approval or disapproval of learning of ones HIV
status from significant others (peers, partner, parents).
Ongoing research in Bandung indicates that perceived
lack of confidentiality at the VCT site (individual factor)
and the travel expenses to reach the VCT site
(environmental factor) and perceived fear for
discrimination (individual factor), are the major barriers
to VCT uptake for people at risk. Other Bandung-based
research explains well the distinction between individual
and environmental factor from the research; cost could

Figure 1. Theory of planned behavior (TPB) (Ajzen 1991)

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be perceived as expensive or cheap to the subjects while


they compare it to the most or less benefit offered by
the services (individual factor) and not by the real
evidence of far or near distance (environmental factor)
they could reach VCT clinic from their residence.38
Self-efficacy/PBC refers to the conviction to be able to
perform the behavior required (coping with bad news or
changing ones life-style or dealing with discrimination)
in learning ones HIV status, whether HIV+ or HIV-.
DEFINING THE BUILDING BLOCKS OF AN EVIDENCE
AND THEORY BASED INTERVENTION: ADHERENCE
TO ARV AS EXAMPLE

Behavioral interventions aiming at changing complex


behavior like sexual risk taking or improving ARV
adherence, are likely to be more effective when based
on evidence of former research and focus on causal
determinants of that specific behavior and when based
on a theoretical concept of behavior and behavior
change. Evidence- and -theory-based interventions also
facilitate evaluation and understanding of the effect of
behavioral interventions, which in their turn feed in the
process of further development of the theoretical
foundations of behavioral interventions. TPB is the most
used and strongest founded theoretical model to predict
a range of behaviors.55,56 Godin and Kok57, reported in
their meta-analysis of 87 TBP studies applied to health
behavior that TPB accounted for 41% of the variance in
behavioral intentions and 34% of the variance in
behavior for a broad range of behaviors. However, TPB
mostly is used as background to understand and explain
the behavior and what to change within the behavior.
However, other theories are mostly used to explain the

Behavioral Aspects of HIV-prevention and Care in Indonesia

behavior change and how to design behavioral


intervention.58
Adherence to ARV, often, (also in Bandung)
measured through self-report is, when linked to more
objective measures like viral load, sub-optimal in about
half of the patients.50,59,60 Very few rigorous evaluations
of interventions to improve ARV adherence are
available.52,61 From a recent Cochrane review we learn
that interventions aiming at improving and strengthening
medication management skills tend to be the most
effective approach to adherence improvement.62 As
discussed before, adherence is embedded, supported,
facilitated and often frustrated by complex behaviors.63
In defining the determinants of this adherence behavior
TPB can, despite its limitations, be very helpful.52 In
order to develop an intervention to improve adherence
to ARV, De Bruin & Hospers et al adapted the TPB
model into concise behavioral components for a
medication adherence model.63
Based on TPB, De Bruin & Hospers propose the
intention of the patient to adhere as the key
determinant. As illustrated in the above model: intention
is determined by 3 factors: subjective norm: what do
specific others like the nurse, physician or partner
expect the patient to do, attitude: the patients belief, in
terms of perceived costs and benefits outcome his/her
adherence behavior, and the perceived behavioral
control (PBC) consisting of self efficacy: perceived ease
(yes I can!) to perform a certain adherence behavior
and the controllability, how much grip the patient has
on the desired and optimal adherence behavior in
different day to day settings.

Figure 2. Behavioral model for medication adherence (De Bruin & Hospers 2005)

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Ideally, an intervention to optimize adherence, uses


all three factors as building blocks to design a tailor-made
intervention in order to influence the intention and actual
adherence behavior: use peers, partner, or professional
to influence the patients norm, change the attitude of
the patient through effective and/or persuasive
communication. In order to influence PBC and self
efficacy (the last building block) it is advisable to
breakdown desired outcome behavior in sub goals,
facilitate this behavior (using adherence organizers like
pill boxes, electronic reminders), plan together with the
patient the execution of the desired adherence behavior
(fitting ARV treatment into the patients daily life) and
introduce self-monitoring and feedback mechanisms to
improve the awareness, reinforce desired behavior and
develop routine in ARV medication. De Bruin & Hospers
developed a 9 step intervention protocol using all above
mentioned behavioral determinants: knowledge improvement, definition of desired behavioral outcome and HIV
status, joined planning and reinforcement of desired
adherence behavior introducing adherence data and self
monitoring as feedback mechanism, defining causes of
(non-) adherence. This multi-disciplinary intervention
implemented in the Amsterdam Academic Medical
Centre outpatient clinic, resulted in an increase of mean
adherence from 82% to 93%. The Bandung ARV clinic
currently is developing a protocol, based on TPB, to study
and subsequently to design an intervention to improve
adherence to ARV.
According to the medication adherence model,
demographic and social/cultural aspects are minor
variables and are supposed to play an indirect role in
influencing behavior. However, current Bandung research
on access to VCT indicates that HIV patients only seek
VCT only after receiving the advice from a physician to
go for HIV testing.35 This observation confirms Conner
and Armitage64 advise to extend the TPB towards
inclusion of two new variables: self-identity: the way a
person relates his/her behavior to societal goals and moral
norms: the persons feeling to perform or not to perform
a particular behavior. In Indonesia social, cultural,
societal goals and societal influenced (group) norms
strongly determine behavior and it would be advisable to
adapt TPB and redefine these variables in the light of
the Indonesian context. When applied appropriatly and
used in the perspective of the targeted population, TPB
can be cultural specific.
DISCUSSION

Also in Indonesia, professionals face challenges to


change behaviors that are relevant in the field of HIV.
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Behaviors considered key to HIV prevention and care


are determined by a complex set of individual and
environmental factors. As pointed out, a well planned,
multi-disciplinary, evidence- and theory based approach
to influencing behavior can contribute a lot to improve
HIV prevention and access and quality of HIV care. In
order to identify determinants of specific risk- or health
behavior, current theories of behavior and behavior
change give all professionals working in prevention and
care effective tools to change behavior. TPB stands out
as particular useful for the HIV field but for practical
and theoretical reasons it needs more and appropriate
conceptualization, definition and explanation. For instance:
Bandungbased research, based on the TPB indicates
that IDUs intention (behavioral intention) is more
affected by the significant others (i.e, parent, peers) when
they ask them to do so (subjective norms) instead of
taking VCT as self-awareness (perceived behavioral
control), despite they have enough relevant knowledge
about the VCT services.38 This result illustrated nicely
that in decision making on what to do or not to do
(behavior intention) Indonesians are strongly influenced
by the value of collective culture, (based on what others
say) to a specific issue. This cultural specific
information,is very important input in the design process
of behavior (change) interventions that work in
Indonesia. As explained before, adherence to ARV as
another example, while description by TPB model is
embedded, supported, and facilitated by complex
behaviors, which can be explained and described through
the intercorrelation of each components in TPB model.
Anyhow, more evidences needed further explaination of
how variance of socio-demographic characteristics and
personality traits, correlated with behavior intention;
which sometimes means as limitation of TPB
explanation or application, so in practice need further
study and research to the approach itself to empower
the utility of the concept. It is advisable to adapt TPB in
the light of the Indonesian context.
CONCLUSION

As mentioned above, high risk behaviors to HIV/


AID (i.e. sharing needles, and sex-related behavior) can
not only be explained by a merely medical conceptual
approach. It needs also explanation based on behavioral
science concepts, as well as medical, and even cultural
concepts to describe the behavior intention, attitude,
perceived belief, or subjective norms, to gain a clear
picture and understanding of the behavior and to make
plan and conduct intervention for behavioral change in
further action. For this purpose researchers can use the

Vol 41 Supplement 1 July 2009

advantages of TPB as a useful overall model to describe


the relation and link of many important components as
reflected by the theory. Therefore, researchers, medical
-and behavioral sciences practitioners and interventionists are challenged to better understand and correctly
utilize existing empirically supported behavioral theories
like TPB, in the process of developing and evaluating
effective behavioral interventions in HIV prevention and
care.
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