Heidari O I et al.
A literature review of incentives used in HIV prevention studies
Using Financial Incentives for HIV Prevention Studies in Diverse Global Contexts: a Review of the Literature Heidari O,1 Ghuman P,1 Soohoo M,1 Davtyan M,1 Folayan MO,2 Brown B1 1 Program in Public Health, University of California, Irvine, USA, 2Institute of Public Health, Obafemi Awolowo University, Ile-Ife, Nigeria ABSTRACT Background: We reviewed and examined various financial incentives used in HIV prevention studies, and outlines important ethical considerations to using financial incentives in HIV prevention research. Methods: We searched PubMed using the terms “HIV”, “prevention”, and “incentive” for articles published between January 2009 and January 2013. Manuscripts were excluded if they were not written in English, not involving humans, and were not clinical trials. Results: Of the 84 manuscripts selected for review, 49 studies were conducted in the US, 13 were conducted in Africa, 17 in Asia, 3 in the Caribbean, 1 in Europe, and 1 in South America. Sample sizes ranged from 37 to 12,590. Of the 49 studies that offered financial incentives, the amount given ranged from $2.00 to $60.00 USD. We found a significant variety of monetary and non-monetary incentives used in HIV prevention studies. Several questions arose considering the ethical standards of using incentives. Conclusion: Incentives can be viewed as coercion of participants into harmful research protocols regardless of researchers obtaining informed consent due to the excessive nature of the incentive. Regulators of research should consider participants’ views when assuming that financial incentives diminish autonomy and capacity for informed decision making. Keywords: HIV prevention, incentives, ethics Citation: Heidari O et al. Using financial incentives for HIV prevention studies in diverse global contexts: a review of the literature Nigerian Journal of Health Sciences 2014; 14: 39-51.
INTRODUCTION Globally, financial incentives have been widely used to motivate participation in research studies. In fact, the majority of research organizations and academic institutions report paying participants for their time commitment and contributions.1 However, clear and concise guidelines for determining the appropriate amount of payment to research participants are nonexistent and as a result remunerations for participation in research studies vary greatly.1 Furthermore, decisions regarding when and why to pay research subjects are divergent, raising ethical, moral, and practical questions within the research community.1,2 Additionally, there is significant evidence that incentives are being used to illicit behavioral change as well as to address structural inadequacies such as poverty. 3-5 Below, we provide a brief background on the rationale for using financial incentives in research studies in general and reviewed the current literature on the use of financial incentives for HIV-related studies, particularly those that used cash payments to reduce the risk of HIV Corresponding author: Dr. Brandon Brown, The Program in Public Health, University of California , Irvine: 653 E. Peltason Dr AIRB Rm. 2024. Irvine, CA 92697-3957, USA. E-mail:
[email protected]
39
by incentivizing behavior change and/or addressing structural factors such as poverty.3-5 Use of Financial Incentives in Research Studies Empirical data on financial incentives suggest that payment is often made to research participants in order to facilitate recruitment.6 Other explanations include creating a revenue-neutral experience for study participants,6 reimbursement for time and contribution to science, respect for research participants’ time, incurring risk and providing incentives to overcome structural barriers such as poverty.7 In a randomized controlled trial of financial incentives and delivery methods to identify a cost-effective strategy to increase study participation, Doody et al8 found that there was a 10-90% increase in participant response rate when using cash payments. A study by Ulrich et al 9 reported a $5.00 cash incentive increased survey response rates to an adjusted 64.2% whereas the non-cash incentive group and no incentive group had response rates of 44.7% and 42.2% respectively. While Halpern et al 10 found that higher payment improved participant willingness to participate, there was no evidence in their cohort that commonly used payments constituted undue influence. Compensation was a significant motivation
© 2014 Nigerian Journal of Health Sciences
Heidari O I et al.
A literature review of incentives used in HIV prevention studies
to participate in research but curiosity, altruism, sensation seeking, hope of personal therapeutic benefit, knowledge, and access to health care services were also found to be noteworthy.11 While most individuals in the research community agree that paying study participants is acceptable in many cases, others have argued that paying participants is unethical.1,12 Ethicists and scholars who studied the impact of financial incentives have raised several questions regarding the use of financial incentives, whether they were actually exploitative or therapeutic, and whether they introduced bias. Some ethicists believe that subject payment leads to skewed sample selection in that study participants are more likely to come from economically disadvantaged populations.10 They postulate that this diminished judgment was an example of coercion and was in direct violation of the US Code of Federal Regulations.12,13 Another argument by ethicists is that financial incentives may impair participants’ autonomy because voluntary decisions may be motivated by money without regard to the actual risks involved in participating, especially for those with low income. 10,12 For example, excessively attractive incentives may encourage people from underprivileged demographic groups to expose themselves to risks or harm especially when the potential benefit of the research is to others.2,12 Additionally, Grant et al2, argued that research relationships become complicated when the research participant is in a dependency type relationship with the study investigator. This may occur when the risks are elevated, when the research is degrading, and when the participant is only willing to provide consent pending a large incentive. This ethical burden may be appropriately defined in HIV-related incentive studies as instances when, “risks are particularly high or where the participant will only consent if the incentive is relatively large because the participant’s aversion to the study is strong.”2 Use of Financial Incentives in HIV-Related Studies In a study of financial incentives to reduce plasma HIV RNA among patients, Farber et al14 sought to evaluate the feasibility of using financial incentives to improve adherence to antiretroviral therapy (ARVs). They found that offering a cost-saving and cost-neutral financial incentive of $100 contingent on an “either/or” reward criterion (patients needed to reduce HIV RNA to undetectable levels or illustrate a viral load that was a factor of 10 lower than prior lowest viral load), increased undetectable viral load from 57% to 69%.14 Similarly, the evidence presented from a literature review on the use of conditional economic incentives (CEI) to improve HIV treatment adherence suggested that CEI methods significantly increased (ARV) adherence while the incentives were in place, but adherence decreased to pre-intervention levels once the 40
incentives were removed.15 Additionally, in a study of perceptions of financial incentives for research participation among African-American drug users in HIV studies, Slomka et al7 found that monetary payment was essential in attracting participation. In 2011, Kokolo et al16 performed an ethical appraisal of 11 HIV pre-exposure prophylaxis (PrEP) studies. They identified several ethical considerations in study design from the following guidance documents: (1) Ethical Considerations in Biomedical HIV Prevention Trials by UNAIDS and WHO17 (for example, potential harms including stigma from being in a high risk group such as drug user, homosexual, and/or a sex worker, discrimination including job loss, social ostracism, denial of health care, property rights and/or inheritance, affects marriage prospects and domestic violence; and recruitment of participants did not discuss incentives but rather focused on selection and recruitment and engaging only those participants who give true voluntary consent and do not need permission of a third party for participation); (2) Methodological Challenges in Biomedical HIV Prevention Trials by the Institute of Medicine18 (for example, methodological challenges with vulnerable populations must ensure that participants do not perceive incentives that are unduly influential, and local institutional review boards [IRBs] must deem them appropriate); and (3) Ethical Principles and Benchmarks for Multinational Clinical Research by Emanuel.16,19 However, none of these sources gave any specific guidance on use of incentives in HIV prevention studies. Data on the potential impact of using financial incentives as an HIV prevention strategy is scarce. 3 However, this information is critical to better examine the amount of money or financial compensation being given to research participants as well as the exact context in which financial incentives are being used. The current study examines various financial incentives used in HIV prevention studies between 2009 and 2013 in both US and non-US countries, and outlines important ethical and moral considerations to using financial incentives in HIV prevention research. METHODS In order to examine financial incentives used in HIV prevention studies, we reviewed HIV prevention studies retrieved from PubMed using the terms “HIV”, “HIV positive”, “Free”, “Gift”, “Payment”, “Incentive”, “Money”, Acquisition”, “Compensation”, and “Randomized”. We found articles published from January 1, 2009 to January 1, 2013. We included studies that focused on HIV prevention activities. We excluded studies if “HIV” and “prevention” were not in the title, if HIV prevention was not studied directly, if the studies were not written in English, not conducted on humans, and not clinical trials. © 2014 Nigerian Journal of Health Sciences
Heidari O I et al.
A literature review of incentives used in HIV prevention studies
Figure 1 shows the literature search flowchart. Our search identified 19,693 articles of which 18,205 were eliminated because they did not have the search criteria in the title, were not in English (n = 16), were not focused on humans (n = 156), or were not clinical trials (n = 894). Of the 422 remaining articles screened, we eliminated 229 because they did not study HIV prevention directly, they were not an intervention (n = 34), were not about HIV (n = 69), were a secondary analysis of another study (n = 4). We were unable to identify the objectives and design of two additional articles and therefore eliminated them from our current analysis. The remaining 84 articles met the inclusion criteria and were selected for identification of the intervention(s) used and the incentive(s) offered. We read each of the 84 studies to identify the country where the study was conducted, sample size, study intervention and type of incentive(s) given. We recorded all the listed incentives included in each study. If an incentive was not listed, the primary investigator was contacted regarding if an incentive for participation in the study was used and the nature of the incentive.
An extensive search was conducted using search criteria
18, 205 did not have ‘HIV’ and ‘prevention’ in the title 156 did not study humans 16 were not written in English
19, 693 articles identified using search criteria
894 were not considered a clinical trial
229 did not study HIV prevention directly 422 screened after they met search criteria
34 were not an intervention 69 were not about HIV 4 were a secondary analysis
84 articles were selected for identification of an intervention(s) used and the incentive(s) offered
2 studies could not be identified
2 studies could not be Figure 1 showing the literature search flowchart identified
interventions were used to prevent HIV: education (n = 43), counseling and motivational interviewing (n = 20), testing (n = 4), treatment (n = 2), pre-exposure prophylaxis (n = 2), condoms (n = 3), weaning (n = 2), payment to stay negative (n = 2), body empowerment (n = 1), microbicide (n = 1), housing (n = 1), vocational training (n = 1), and circumcision (n = 2) (Table 1). Eleven studies utilized multiple utilized multiple types of interventions within a study. Forty-nine of the studies were conducted in the US, 13 were conducted in Africa, 17 in Asia, 3 in the Caribbean, 1 in Europe, 1 in South America, and one study’s location could not be determined. Sample size ranged from 37 to 12,590. A total of 49 studies offered monetary compensation or gift cards of which three did not specify an amount. Table I shows articles with studies conducted outside of the United States. We contacted authors of ten studies who did not list incentives, however only six of these authors responded with the incentive types/amounts in their study. Eleven studies did not offer incentives. We categorized type of monetary compensation into one of the following two groups: (1) money provided on a conditional basis, and (2) money provided to address structural or economic factors. The majority of studies fell into the first category. Of the 49 studies that offered financial incentives, 39 provided monetary compensation on a conditional basis. For example, money or a gift card was given to study participants after they completed the baseline survey or interview and each of the follow-up surveys or interviews. Money was also given to participants who agreed to HIV testing or attended HIV intervention sessions. The amount of incentives ranged from $2.00 USD per survey completed (education intervention in Liberia) to $60.00 USD per baseline assessment (education intervention in the US). See Table II for descriptions of studies based in the United States compared to Table I (studies based outside of the United States). The remaining 10 studies provided money to address structural or economic factors. For example, money, food/refreshments, transportation and other goods (school fees, school supplies/uniforms) were given as incentives to participate. In one US-based study, sites were compensated $5,000 and could determine what incentives to offer study participants. In another study, money was given to families participating in both the intervention and control groups. Finally, 23 of the studies provided incentives in the form of an HIV test, counseling, or treatment for underlying STIs positive HIV tests, and post-exposure prophylaxis. DISCUSSION The evidence presented in the present literature review suggests that providing research participants with financial incentives, whether on a conditional basis or
RESULTS Of the 84 manuscripts reviewed, the following 41
© 2014 Nigerian Journal of Health Sciences
Heidari O I et al.
A literature review of incentives used in HIV prevention studies
Table I: Articles with studies conducted outside of the United States Country Study n Target Intervention Year Population Type 2007120 Street based female Education Armenia[23] 2008 sex workers
Main Outcome HIV prevention
Bahamas
20042005 20042005
1360
Grade 6 students
Education
Condom use
1360
6th grade students
Condom Use
20042009
496
Women 18-49 years old
Education
Risky behavior & HIV prevention HIV prevention
20082010
37
Counseling
20042005
54
20052006
301
Published in 2012 20072008 20052006
100
Adults in methadone treatment Adults given post exposure prophylaxis Adult male Hong Kong Chinese truck drivers Wives of men who drink 13-14 year old students Couples who engage in unprotected sex & driving under the influence
Kenya & Uganda [33]
20082010
4758
Kenya
20022006 20092012
2168
Heterosexual HIV serodiscordant couples HIV negative men
Pre-exposure prophylaxis [PEP] Circumcision
1121
HIV positive pregnant women w/o infant care
Treatment
Published in 2013 2008
812
Adolescents
Education
45
HIV positive in BAN study
Weaning
2011
282
College students
166
Female sex workers
South Africa [40]
20072009 20072010
889
South Africa [41] South
20102011 Published
480
HIV negative women ages 18-40 years old Pregnant women
Peer education Education & interview Microbicide
160
Adult males
[24]
Bahamas [25]
Chile [26]
China [27]
France [28]
Hong Kong [29]
India [30]
Japan [31] Kazakhstan [32]
[34]
Kenya [35]
Liberia [36] Malawi
490 80
[37]
Malaysia [38]
Mongolia [39]
Counseling
Counseling, education, & testing Testing/Education Education Couple based education
Counseling Educational
42
HIV risk reduction & prevention HIV risk reduction HIV prevention, condom use HIV prevention HIV prevention HIV & sexually transmitted infections [STI] prevention HIV prevention HIV risk reduction HIV & Mother to Child Transmission prevention & clinic integration Condoms & HIV prevent HIV prevent program feasibility HIV prevention HIV prevention HIV prevention HIV prevention HIV risk
Incentive $5 USD for recruitment of other participants, $20 USD for participation & services NA Money for questionnaires
Approximately $5 USD for baseline and follow up questionnaire Methadone dose from the program and individual counseling NA
Counseling and testing
Refreshments Individual counseling sessions $1, $5 & $7 USD for screening, assessment & intervention, respectively
500-1000 Kenyan or 15,000 Ugandan shillings per visit & HIV services Circumcision Antenatal care and HIV treatment and care
$2 USD per survey (four total) 600 Malawi Kwacha ($4 USD) for transport & 1 kg flour Certificate of attendance and meals NA HIV prevention and reproductive health services HIV testing, condoms, and counseling 100 South African Rand ($12
© 2014 Nigerian Journal of Health Sciences
Heidari O I et al.
Africa
A literature review of incentives used in HIV prevention studies
in 2011
South Africa [43]
Published in 2012
150
South Africa [44]
20042006
1057
undergoing circumcision Adult males undergoing circumcision 6th grade students
Tajikistan
Published in 2011 20072008 Pub. 2010 20032004
60
Male Tajik workers
Education
12590
Young people
Testing
1305
Herpes-2 positive women Pregnant women & their partners
Trinidad & Tobago [49]
Published in 2009
150
Parents and 12-14 year old child
HSV treatment & counseling Couple and individual counseling Parental education
Uganda
Pub 2012
4996
HIV negative men
20052006 Pub 2012
100
Uganda [53]
20052007
7184
Zambia
Published in 2011
3004
Ugandan youth age 13-23 years old HIV positive & ARV naïve HIV infected persons & household members Serodiscordant or contra-cordant couples
20012004
1435
20072009 2003 2007
[42]
[45]
Tanzania [46]
Tanzania [47]
Tanzania [48]
1521
Uganda [52]
[54]
Zambia [55]
Zimbabwe [56]
Zimbabwe [57]
Educational counseling School based education
HIV prevention HIV prevention HIV acquisition HIV risk reduction & prevention HIV prevention
Counseling & education Counseling & education
Contraceptive use
HIV positive pregnant women who will breastfeed
Education and weaning
335
Orphan girls in 6th grade
Payment
Mother to child transmission reduction HIV risk
6791
Youth (9th school year)
Education
180
Circumcision & testing Vocational training Educational game
reduction & prevention HIV risk reduction & prevention HIV risk reduction & prevention
HIV prevention HIV risk act reduction HIV prevention HIV risk reduction
[50]
Uganda [51]
Counseling
given to address structural or economic factors such as poverty, incentives varied greatly across all studies. However, these studies raised several questions regarding the ethical and moral considerations in using financial incentives in HIV prevention research, such as what incentive is considered “excessive” or “appropriate”. In a South African study, researchers were investigating whether $400 USD over an 18 month period is enough of a motive for teenagers to stay HIV free.5 Given that the HIV prevalence in South Africa is 17% and young girls constitute the highest risk group and are particularly burdened, financial incentives used in this study may be considered appropriate within the context of incentives used to improve socio-economic factors while promoting an HIV free lifestyle.5 43
HIV prevention
USD) for transport & survey 100 South African Rand ($12 USD) for transport & survey Supplies for 3 months, T-shirt for 6 months & backpack for 12 month of follow up respectively $20 USD for all 3 surveys HIV blood test & counseling NA Travel compensation if they return for follow up and treatment if HIV positive TT $500 (USD $83) for intervention participants; TT $200 (USD$35) for control participants HIV testing & counseling Vocational training with local artisans NA HIV counseling & testing
Contraceptive methods (emergency, oral, injectable, IUD, Norplant Implant, surgical sterilization) Supply of infant formula and fortified weaning cereal
School support and $15-20 USD per term for school heads & helpers NA
The appropriateness of financial incentives should however be assessed in terms of undue influence/coercion and based on a risk/benefit analysis.2 Research that involves procedures that could harm or endanger a participant in order to ensure that the research benefits are maximized can be deemed unethical, despite obtaining informed consent from participants prior to participation.2 However this also brings attention to the fact that when participants consent to a study where incentives are offered, a transactional relationship is established. Therefore, this fuels debate over whether an incentivized offer can be seen as coercion in order to obtain compliance.20 One way that researchers can avoid providing inappropriate financial incentives would be to consult with local © 2014 Nigerian Journal of Health Sciences
Heidari O I et al.
A literature review of incentives used in HIV prevention studies
Table II: Articles with studies conducted within the United States Country Study n Target Intervention Year Population Type USA [58] 2007344 Female prisoners Education 2008 USA [59] Published 178 African American Education in 2011 women age 14-18 years old USA [60] 2008250 Latina women education 2009 age 18-35 years old USA [61] 2005564 HIV negative Couple based 2010 couples education USA [62] Published 94 Drug offenders Education in 2012 age 12-18 years old USA [63] 2001339 Parent-child dyad Parental 2004 age 9-12 years education old USA [64] Published 56 Adolescents with Education in 2011 substance abuse USA [65]
Published in 2011
2499
USA [66]
20042006
593
USA [67]
2001
189
USA [68]
2004
590
USA and Puerto Rico [69] USA [70]
20072008
339
Published in 2011 20062007 Published in 2009
79
USA [73]
20062009
1245
USA [74]
20012004 2009
1047
20042006 2008
2623
USA [71] USA [72]
USA [75] USA [76] USA [77]
313 54
246
13674
HIV negative men who have sex with men (MSM) or transgender women Injection drug user (IDU) or risk network member HIV negative women with risky behavior Men in methadone or non medication psychosocial program African American and Latino families Women African American women Abstinent girls age 14-19 years old American Indian students on reservation & their caretakers Young pregnant women Haitian teens age 13-18 year old Adults age 18-24 years old Adult MSM
Main Outcome HIV prevention HIV prevention & condom use Condom use
HIV risk reduction HIV prevention
Incentive $20 for first interview, HIV test & for follow-up $50 gift card for first interview & $25 cash for follow-up $50 gift card for completing interviews & $30 gift card for intervention sessions Money for baseline & follow-up $50 gift card at baseline and 3 month follow-up
HIV prevention
$25 for expenses incurred from each session
HIV, STI, and HBV prevention Safety & efficacy of HIV prevent drug
Substance use counseling, HIV case management
HIV prevention & awareness Study Feasibility
$10 for every risk network member who enrolled and $30 for baseline visit $20-25 for each study visit
Education
HIV prevention
5 sessions of HIV risk reduction program or 1 session of HIV education
Parental education
HIV pre-risk prevention
$5000 to each study site to distribute at their own discretion
Female condoms Education
HIV prevention HIV prevention Sexual risk reduction/ prevention HIV prevention
$5 screening, $30 baseline & $15 follow-up $20 baseline, $25 3 month & $30 6 month follow up $20 for completing baseline assessment
$20 for each interview
Condom use
HIV prevention HIV prevention Condom Use
Video education
HIV prevention
Pre-exposure prophylaxis
Peer education Body empowerment
Education
Education
Education Education
44
Study medications, HIV testing, counseling, condoms, diagnosis, STI treatment, Hepatitis B vaccine, PEP
$10 money order for students & $20 for caretakers for each survey
$15 baseline & 4 week follow-up. $5 for group session $10 baseline, $5 1 month follow-up; bonuses totaling $25-30 NA
© 2014 Nigerian Journal of Health Sciences
Heidari O I et al.
A literature review of incentives used in HIV prevention studies
USA [78]
2009
1281
USA [79]
Published in 2012
295
USA [80]
20092010 Published in 2012
242
USA [82]
20092010
100
USA [83]
20052010
564
USA [84]
Published in 2011
457
USA [85]
2008
590
USA [86]
20052007; 2010 Published in 2011 20022004
169
USA [89]
Published in 2010
386
USA [90]
20042008
1686
USA [91]
20032007
1070
USA [92]
Published in 2010
186
USA [93]
20052006
311
USA [81]
USA [87] USA [88]
1346
142 712
Adults in drug abuse program African American or Latina women age 18-29 years old Delinquent Hispanic youth African Americans age 14-17 years old HIV infected adults at least 45years old HIV negative couples with 1 IDU user HIV negative individual, at least 14 years old & recent intercourse with HIV positive partner Adolescent age 15-21 year old sexually active patients in emergency department/urgent care Females age 1855 with risky behavior Hispanic males
counseling
HIV prevention HIV prevention
HIV test, counseling, risk reduction plan, referrals for services Personal use of smartphone for duration of 12 week study
HIV prevention HIV risk reduction & prevention HIV risk reduction & prevention HIV prevention
$60 baseline & $70 follow up survey
HIV risk reduction & treatment
Counseling & PEP treatment
Counseling & education videos
HIV risk reduction & knowledge
Counseling & optional HIV test
Peer mentors & education
HIV prevention
$35 for study visits & $20 for each group session
Education
HIV prevention HIV risk reduction & prevention
$35 for baseline & $55 for 3 month follow-up $20-40 for baseline, $10-15 for each visit, $20-25 for each intervention session. $40 bonus for attendance all sessions $25 at baseline & $25 for 6 month follow-up
IDU, age 15-30 year old and HIV/HCV negative HIV positive patients engaging in unprotected sex in last 6 months MSM who engaged in unprotected sex while under the influence or with unknown serostatus partner HIV serodiscordant couples, one is African American HIV positive youth age 16-24 years old HIV negative women with no recent injection
Peer or education video
Educational soap opera videos Parental education Media messages Telephone interviews Couple risk reduction & education Counseling & treatment
$30 baseline & small increases for follow-up survey, STI treatment $20 baseline, $25 3 month & $30 6 month follow-up survey Monetary for baseline & follow-up survey
Provider education & patient interaction Counseling
HIV risk reduction & prevention HIV risk reduction & prevention
Counseling & testing, $20-40 reimbursement for travel. Only $15 for late arrival. $20-25 for 3 follow up sessions in increasing increments
Couple education
HIV risk reduction & prevention
NA
Motivational interviewing
HIV risk reduction
$30 for baseline & $35 for follow-up
Counseling & education
HIV risk reduction & prevention
Counseling, education, & HIV and Hepatitis B testing
45
© 2014 Nigerian Journal of Health Sciences
Heidari O I et al.
A literature review of incentives used in HIV prevention studies
USA [94]
19982002
1707
USA [95]
20062008
188
USA [96]
2007
79
USA [97]
20042005
630
USA [98]
20042006
USA [99]
drug use Teens age 13-18 years old
Educational activities
HIV risk reduction & condom use
African American MSM age 16-24 years old HIV positive adults in a rural area HIV positive homeless or at risk for homeless
Motivational interviewing
HIV knowledge
An average of $16,572 for each study site for personal costs, supplies, refreshments, & facility fees. Patients received $20 for each assessment (pre, post, 3, 6, and 12 month follow-up) HIV testing, counseling & $20 compensation
Telephone motivational interviewing Housing assistance
HIV risk reduction
$20 for pre assessment & $20 for 2 month follow-up $55, $60, & $75 for 6, 12, 18 month assessments respectively
484
Adolescents in juvenile detention
20052006
675
HIV positive MSM
USA [100]
20032007
170
HIV positive with cocaine or opiate abuse
Group interventions & interviews Seminars with multimedia Contingency management
HIV risk reduction & health outcomes HIV risk reduction
USA [101]
2005
87
USA [102]
20042006
150
Motivational interviewing Motivational interviewing & videos
HIV care adherence HIV risk and drug use reduction
USA [103]
20062008
278
Counseling
HIV testing uptake
NA
USA [104]
2005
128
20002002
424
Educational video & counseling Couple education
HIV risk reduction & prevention HIV risk reduction & prevention
Counseling & testing
USA [105]
USA [106]
20012004
530
HIV positive, age 16-29 years old MSM age 18-65 years old who engaged in drug use Pregnant women at least 16 years old Adult patients in the emergency department Couples with a woman age 18-25 years old who have engaged in risky behavior Recently incarcerated or on parole/probation women
Motivational interviewing
Not Identified
19992003
253
MSM with history of alcohol abuse
Motivational interviewing
HIV and intimate partner violence risk reduction HIV risk & alcohol use reduction
$20 screening, $25 for biological testing, $25 for each intervention (12); $25-50 for each 3, 6, 9 month followup. $10-15 for contact between assessments $30 for baseline, 3, 6, 9, & 12 month follow up assessments.
[107]
research ethics committees or key informants who are of the target population that can provide unbiased feedback regarding personal and community benefits; their input can decide on appropriate incentives for risk incurred by participation in a research study. 21
46
HIV risk reduction HIV risk reduction
$25 for pre & post interventions & $25 for 3, 6, and 9 month follow-up. $50 for 12 month follow-up $100 for pre & post survey. $25 for each 6, 12, & 18 month follow-up $25 for all surveys $10 per session (up to 24). $25 for submitting samples & completing 5 follow-up surveys. $15 for baseline survey. $25 for return of viral load results. $330 for negative samples & $660 in total for prize draws NA NA
Condoms, lubricant, & referrals for HIV counseling & testing. $30, $40, $50 for baseline, 3 & 6 month assessments
Furthermore, researchers and ethics committees should consider participants’ views when assuming that financial incentives diminish autonomy and capacity for informed decision making. If subjects are offered a monetary amount that is considered to be too exorbitant
© 2014 Nigerian Journal of Health Sciences
Heidari O I et al.
A literature review of incentives used in HIV prevention studies
given their current financial circumstances, then using the incentive could be called into question.2 For example, incentives that are paternalistic, manipulative, or exploitative may compromise a potential subject’s judgment. Those conducting research should proceed with approaches that encompass human motivation as opposed to manipulating participant behavior in a direction that directly benefits research outcomes.22 CONCLUSION The impact of implementing financial incentives into research studies is a widely debated topic in the scientific community. While some researchers may support the use of incentives as an approach for recruiting participants, others are concerned that incentives can elicit coercion in specific populations such as low-income communities. Our study aimed to review literature that investigate the types and amount of incentives and question the extent to how effective incentives are when conducting a research study, especially one that is related to the public health or medical field. Findings suggest that there is still an ongoing debate about the ethical considerations of cash incentives as a method to increase study participation. Although our research found a wide range regarding the impacts of using incentives in health-related studies, we identified some limitations in the use of incentives. One limitation we found was that from literature that we examined, there was no standardization in incentive amount. Offered incentives ranged from none to very lucrative amounts for participation in the study. A review of the studies with ethical considerations raised interesting questions. For example, would offering exorbitant incentives for participation in a risk reduction/prevention program yield accurate results from self-reported data from participant regarding behavior changes? On the other end of the spectrum, is offering incentives to vulnerable populations, considered coercion? Another limitation to our study is that we looked at articles over a 4-year period (Jan 1, 2009- Jan 1, 2013) and only considered articles pertaining to HIV prevention. A larger collection of studies would provide a more in-depth analysis of this type of research and would reduce the limitations present in our analysis. Future studies may want to look at HIV studies over a longer period of time to obtain more accurate results. In addition, there need to be larger studies involving different regions which may provide a diverse and wellrounded understanding of incentives and how they influence behavior. While beneficial to the recruitment and retention of research participants, incentives should first be screened by ethics committees and local community members and leaders in order to evaluate their appropriateness, especially in high risk studies that require recruitment of vulnerable populations. 47
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