Behavioral aspects of HIV prevention and care in Indonesia
A plea for a multi-disciplinary, theory- and evidence-based approachElmira N Sumintardja 1,2, Lucas WJPinxten 2,3, Juke R Siregar 1, Harry Suherman 1,2, Rudy Wisaksana 2,4 , Shelly Iskandar 2,5 , Irma A Tasya 2 , Zahrotur Hinduan 1,2, Harm J
Hospers 3
1Faculty of Psychology, Padjadjaran University, Bandung, Indonesia
2Health Research Unit, Faculty of Medicine, Padjadjaran University/Hasan Sadikin Hospital, Bandung, Indonesia.
3 Department of Work and Social Psychology, Faculty of Psychology and Neuroscience, Maastricht University, Maastricht, the Netherlands
4Department of Internal Medicine, Faculty of Medicine, Padjadjaran University/ Hasan Sadikin Hospital, Bandung, Indonesia
5 Department of Psychiatry, Faculty of Medicine, Padjajaran University/Hasan Sadikin Hospital, Bandung, Indonesia
Word count abstract 198
Word count main text 3,367
Contact address: Lucas Pinxten, IMPACT Bandung Jl Pasir kaliki 190, Bandung 40151, +62-2270720492, lpinxten@yahoo.com
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Abstract
Background: 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.
Evidence on risk behavior: 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.
A model to analyze complex behavior: Meta-analysis indicated that about 1/3 of the variation in changing behavior 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.
Discussion and conclusion: 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.
Keywords: VCT, ARV adherence, Injecting Drug Use, AIDS/HIV, Theory of Planned Behavior, Intervention Mapping.
1. Background of Indonesian HIV epidemic
According to UNAIDS and WHO estimates, in Asia around 5 million people are living with HIV (range: 3.7 million–6.7 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% (7,8,9,10) and unsafe injecting practices are estimated to account for over 75% of all new HIV infections.(9,11) Around 2000 approximately one quarter of IDUs in Bandung, Jakarta and Bali reported to have engaged in unprotected sex with commercial 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 HIV-positive and 21 % incarcerated.(14,15)
about 42% of the patients hold a senior high school degree and 31% of the patients hold an academic degree. (19)
According to the Indonesian National Narcotics Board, approximately 1% of Indonesia's 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 one is but what one 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, social 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 well planned evidence and theory-based activity in order to be effective (23,24,25). Especially the use of behavioral models facilitates all professionals working in the HIV field to critical analyse of the situation of the individual, group or the environment in order to 75
develop, implement and evaluate appropriate and effective prevention and care interventions.
This paper presents empirical data and theoretical concepts to determine the role of social 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 Mapping 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).
2. 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 last year. Of the 321
surveyed IDUs only 10% of this group was ever tested for HIV.(26) According to the 2007 national bio-behavioral survey, 82% of the Bandung IDUs do not use 105
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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 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 Hassan 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.(32,33,34) 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 last year most patients in the Bandung RSHS decided to go for a VCT test only 135
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 by 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 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 their high 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- nor 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 166
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(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 itself (44), socio-economic factors
like lack of social support from family and friends (45), 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, in-adequate 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.
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 to relate the self-reported adherence to a gold standard like electronic pill registration devices in order to validate the self reported adherence
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3.
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 variation in changing behavior 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 Bandura’s self-efficacy concept) are 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 one’s HIV status is primarily a function of the beliefs about positive and negative consequences of knowing one’s 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
INSERT FIGURE 1 HERE
Subjective or social norms refer to the perceptions of approval or disapproval of learning of one’s 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.(38) Self-efficacy/ PBC refers to the conviction to be able to perform the behavior required (coping with bad news or changing one’s life-style or dealing with discrimination) in learning one’s HIV status, whether HIV+ or HIV-.
4. 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 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 Kok (57), 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 behavior and to develop measures of behavioral change, but rarely used to design behavioral interventions.(58)
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. 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)
INSERT FIGURE 2 HERE
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 patient’s 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.
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 patient’s 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 patient’s daily life) and
introduce self-monitoring and feedback mechanisms to improve the awareness, 290
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 form a physician to go for HIV testing.(35) This observation confirms Conner and Armitage (64) 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 appropriate and used in the perspective of the targeted population, TPB can be cultural specific.
5. Discussion and conclusion
Also in Indonesia professionals face challenges to change behaviors that are relevant in the field of HIV. 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 321
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and access & quality of HIV care. In order to identify determinants of specific risk-or health behavirisk-or, current therisk-ories of behavirisk-or and behavirisk-or 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. However we, researchers, medical -and social 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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Figure 1. Theory of Planned Behavior (TPB) (Ajzen 1991)
Figure 2: Behavioral model for medication adherence (De Bruin & Hospers 2005) 617
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