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Ending acquired immune deficiency syndrome (AIDS) depends on greater efforts to reduce new human immunodeficiency virus (HIV) infections and prevent AIDS-related deaths among key populations at highest HIV risk, including males who have sex with males, sex workers, and people who inject drugs. Although adolescent key populations (AKP) are disproportionately affected by HIV, they have been largely ignored in HIV biological behavioral surveillance survey (BBSS) activities to date. This paper reviews current ethical and sampling challenges and provides suggestions to ensure AKP are included in surveillance activities, with the aim being to enhance evidence-informed, strategic, and targeted funding allocations and programs toward ending AIDS among AKP. HIV BBSS, conducted every few years worldwide among adult key populations, provide information on HIV and other infections’ prevalence, HIV testing, risk behaviors, program coverage, and when at least three of these surveys are conducted, trend data with which to evaluate progress. We provide suggestions and recommendations on how to make the case to ethical review boards to involve AKP in surveillance while assuring that AKP are properly protected. We also describe two widely used probability sampling methods, time location sampling and respondent driven sampling, and offer considerations of feature modifications when sampling AKP. Effectively responding to AKP’s HIV and sexual risks requires the inclusion of AKP in HIV BBSS activities. The implementation of strategies to overcome barriers to including AKP in HIV BBSS will result in more effective and targeted prevention and intervention programs directly suited to the needs of AKP.
Ending human immunodeficiency virus (HIV) or acquired immune deficiency syndrome (AIDS) relies on greater efforts to reduce new HIV infections and prevent AIDS-related deaths among key populations at highest risk. Whereas data are limited, studies from low and concentrated epidemic countries suggest that HIV prevalence is disproportionately high among adolescents, aged 10-19 years, who sell sex, engage in same-sex relationships, and inject drugs [
Since early 2000, HIV biological behavioral surveillance surveys (BBSS) have been a key component of national responses to HIV [
The lack of continuous, systematic collection, analysis, and interpretation of data on AKP has resulted in a dearth of strategic information needed for the planning, implementation, and evaluation of essential HIV programs. This paper discusses the ethical barriers related to sampling AKP, and suggestions on how to overcome them, and presents recommendations on how to include AKP in BBSS using time location sampling (TLS) and respondent driven sampling (RDS).
One of the barriers to AKP inclusion in BBSS is ethical constraints. In almost all countries, adolescents under 18 years are considered children and entitled to the protection of their rights under the Convention on Rights of the Child [
Ethical considerations and suggestions for conducting biological behavioral surveillance surveys (BBSS) among adolescent key populations (AKP) under the age of 18 years.
Topic | Considerations and suggestions |
Obtaining informed consent for studies involving adolescents | Meet with and receive input from all relevant groups and agencies when designing protocols and consent forms, and when considering who will need consent from parents or guardians. For instance, in some countries (1) the age of majority may be younger than 18 years, and (2) children who are married, living independently, or in child-headed households may be considered “liberated minors” and thus, may not require additional consent from a parent or guardian. |
When requesting consent for surveys on sensitive issues from a parent or guardian on behalf of AKPa, it may be necessary to keep the nature of the survey vague (ie, refer to a survey on sexual risk or drug use as a “health” survey) and list sex or drugs as one of many health issues being assessed. | |
Domestic laws governing adolescent protection |
Review domestic laws for mandatory reporting of disclosures of adolescent abuse, neglect, violence, or exploitation; consider how mandatory reporting would affect the final research outcome (eg, Will AKP refuse to participate if their information is not confidential? and Will AKP refuse to report certain types of information?) and decide whether a waiver is needed. |
Discuss issues of including or waiving mandatory reporting with adolescent protection officials, social workers, rights advocates, partner agencies, etc. | |
Approval of such waivers may only be possible through the national ethical review board or a senior-level adolescent protection authority. | |
Identification of, and referral to, services for adolescents | Identify and develop a comprehensive list of potential services for AKP (ie, services able to address issues of violence, abuse, neglect or exploitation, and other services such as drop-in centers, shelters, helplines, government or non-government social welfare, vocational training, school programs, health care, legal aid) to respond to AKP special situations. |
Provide referral lists to AKP who participate in a study, whether or not they disclose harm or high-risk behavior. | |
Be able to identify which specific service an adolescent may need to access |
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Ensure that research protocols include clear procedures for making discreet, direct referrals to service providers, should AKP request such assistance. Unless there are mandatory reporting requirements, confidentiality must be respected. | |
Work with qualified adolescent protection or health professionals to establish guidelines and meet with potential service providers to assess the capacity, expertise, and resources to respond to direct referrals, including how to respond to urgent or acute abuse, neglect, violence, or exploitation cases. | |
If no services exist in the survey area or staff is not equipped to respond to referrals from AKP participants, consider budgeting for and establishing a temporary team of trained service providers to whom AKP can be referred during and shortly following data collection. | |
Consider providing transportation arrangements so that service providers in nearby areas can meet with AKP who request support. Plan these arrangements in cooperation with protection and health professionals. | |
Develop plans to determine how to accommodate AKP needing long-term or specialized support beyond the research. | |
Eligibility | Many labels used by researchers to describe key populations (ie, people who inject drugs, male or female sex workers) may not be recognized by AKP engaging in the same behaviors. Refer to the behavior guiding the eligibility, rather than the population group. |
Support during the survey | Have available a professionally trained social worker or advocate (a person or service provider with qualifications to provide information and support to an adolescent in distress). |
Biological testing | When considering inclusion of a biological component, find out (1) if the country’s ethical standards allow testing on adolescents. If so, what are the laws governing HIVb or other infections testing of adolescents? (2) How is pre- and post-test counseling conducted for and test results provided to AKP and/or parents and guardians? and (3) Whether there are available and appropriate referrals for care, management, and treatment for AKP with positive test results. |
aAKP: adolescent key populations.
bHIV: human immunodeficiency virus.
Informed consent for AKP under the age of 18 years should include considerations beyond general ethical assurances included in any protocol. Extra effort may be needed to ensure that adolescents understand all of the elements in a consent process, including the purpose of the research, the kinds of information to be collected, how confidentiality will be maintained, the interview procedure (in particular that the participant does not have to answer questions with which she or he does not feel comfortable, and that the interview can be stopped at any time), and a contact number for more information about the study or to make a complaint [
Some countries have specific regulations that disclosures of violence, abuse, neglect, or exploitation of a child override confidentiality and must be reported to relevant authorities. Government employees or particular professions (eg, social workers, health workers, and teachers) or any person aware of an incident must report it. If there are no exemptions for mandatory reporting for the research, then a waiver from an appropriate authority is needed so that interviewers are not required to report abuse disclosures without the adolescent’s approval. It is essential for survey planners to (1) review domestic mandatory reporting laws of disclosures of child abuse, neglect, violence, or exploitation and consider how reporting would affect the final research outcome; and (2) discuss options to waive mandatory reporting by adolescent protection officials, social workers, rights advocates, and partner agencies.
Collecting biological specimens from AKP under the age of 18 years will normally require informed consent from parents and guardians. In many situations, parents and guardians will have access to the test results [
Much of our knowledge about adolescent health comes from household- and school-based surveillance, both of which rely on populations that have sampling frames [
TLS was first used to estimate HIV seroprevalence among young MSM (15-22 years) in the United States [
RDS was first used to sample people who inject drugs in the United States [
Both methods can, and have been, used for HIV and non-HIV related surveys of AKP (10-19 years) [
RDS was used in several provinces of Thailand among young (15-24 years) females who exchange sex for money and goods, MSM, young non-Thai migrants, and transgender youth [
Web-based RDS has been developed to sample hard to reach populations through messaging and emails [
When using TLS and RDS to conduct research on AKP, it is important to consider how the methodology should be modified in order for it to be accepted by, and appropriate for, adolescents. When selecting time periods for sampling AKP, one TLS survey of adolescents who use drugs adjusted their data collection activities to avoid hours when activities such as school, work, or chores were most likely to occur. When selecting a data collection site, an RDS survey of street youth in Albania anticipated that waiting space would be needed for older siblings, parents, or other caretakers accompanying an adolescent participant or for younger siblings who were in the care of an adolescent participant [
Time location sampling (TLS) methodology features, description of those features, and considerations for applying those features when conducting surveys of adolescent key populations (AKP).
Feature | Current implementation of features | Considerations of features when sampling AKPa |
Mapping | TLSb requires a complete mapping of all venues in a sampling location. | Venues mapped for adults may not be the same as those mapped for AKP. Involve AKP and groups working with AKP to help map venues. |
Sampling times and periods | TLS requires that sampling times be randomly selected. | Make sure to include sampling times that conform to AKP’s availability. |
Recruitment | TLS involves researchers approaching participants. Sometimes this involves intercepting participants in the street or at a venue and then escort them to another location for an interview and/or testing. | Involve youth as interviewers to minimize intimidation of AKP interviewees. |
aAKP: adolescent key populations.
bTLS: time location sampling.
Respondent driven sampling (RDS) methodology features, description of those features, and considerations for applying those features when conducting surveys of adolescent key populations (AKP).
Feature | Current implementation of features | Considerations of features when sampling AKPa |
Pre-survey research | Conduct pre-survey research to assess populations’ social networks, RDSb acceptability, and logistics. | Organizations working with AKP can help identify sites where AKP spend time, meet friends, find new sex partners, or buy or sell drugs. Sites may or may not be the same as those frequented by adult key populations. |
Seeds | Seeds are the initial participants that start the recruitment from within the network of interest. | In surveys of adolescents and adults together, select an ample number of AKP seeds who are more likely to recruit other AKP. |
Incentives | A nominal incentive, usually in the form of local currency, is usually provided to participants who complete the survey process and for recruiting their peers. | Make sure a country’s research ethical standards allow incentives to be provided to adolescents. |
Measuring social network size | For RDS analysis, the number of eligible people that each subject “knows” and has seen during a specified period of time (eg, 2 weeks) is needed. This question is open-ended and gaining accurate responses can be difficult, especially from someone uncomfortable with counting. | Use special probing techniques to assist with and encourage accurate reporting of social network sizes. |
Interview sites | RDS usually requires recruits to be present at an interview site to undergo the survey. | Interview sites should be easy to access, safe, and comfortable for AKP. |
Staffing | RDS surveys usually have numerous staff members, including someone to screen for eligibility, interviewers, pre- and post-test HIVc counselors, coupon managers, and so on. | Ensure staff members are trained to interact with adolescents and can recognize signs of distress and able to respond appropriately. |
Coupons | Coupons are used by participants to recruit peers. Coupons convey important information about the survey location, operation hours, etc. | Use simple coupon designs and words that are easily understandable to adolescents. |
aAKP: adolescent key populations.
bRDS: respondent driven sampling.
cHIV: human immunodeficiency virus.
Both TLS and RDS require additional considerations when collecting biological and sensitive behavioral data from AKP (
Special considerations and suggestions when adapting biological behavioral surveillance surveys (BBSS) among adolescent key populations (AKP) in time location sampling (TLS) and respondent driven sampling (RDS).
Topic | Considerations and suggestions |
Pre-survey assessment | An AKPa specific pre-survey assessment may include (1) meetings with and involvement from parents, guardians, or community gatekeepers to ensure AKP participate in surveys, (2) community meetings (without disclosing the full nature of the research that could result in further stigma or reprisals) to garner community acceptance of collecting information from AKP, (3) meetings with government officials, child advocates, and NGOsb working with adolescents to be fully aware of country laws and guidelines governing the involvement of children in research, and (4) research to determine if adolescent-friendly communication technologies (ie, mobile phone apps and Internet websites) or eliciting questions through cell phones and computers can enhance sampling (Note: Web-based surveys do not allow for biological data collection). |
Questionnaires and other data collection forms | Materials for adolescents of higher age ranges (eg, 15-19 years) need to be adapted for those of lower age ranges (eg, 10-14 years). |
Keep questionnaires and materials short and simple, and include adolescent-appropriate language. | |
Forms to be read by participants should be easy to read using language commonly used by adolescents. Some AKP are not able or do not want to read something—have the option that materials can be read to them. | |
Consider the use of drawings to convey important information. | |
Interviews | Interviews among AKP should be short. |
Allow respondents to take breaks during an interview. | |
HIV and other testing | Minimize the invasiveness of HIV testingc and other testing procedures. Consider using oral swabs or finger pricks instead of venous blood. |
Eligibility | Labels used by researchers to describe AKP (ie, people who inject drugs, male or female sex workers) may not be recognized by adolescents engaging in the same behaviors. Refer to the behavior, for example, selling sex in exchange for money, rather than the population group (sex workers). |
Support during the survey | Have available a trained social worker or child advocate (a person or service provider with qualifications to provide information or support). |
Dissemination and validation | Once data are analyzed, go back to AKP to disseminate and validate data. |
aAKP: adolescent key populations.
bNGO: non-governmental organization.
cHIV: human immunodeficiency virus.
This paper is a product of an international meeting convened to share lessons learned, improvements and innovations, and outputs on HIV surveillance activities. This was the third such meeting (2004 in Addis Ababa, Ethiopia; 2009 and 2015 in Bangkok, Thailand) but the first to include a focus on AKP, reflecting recent concerns about their absence in HIV BBSS [
We note that there are several ethical barriers to sampling adolescents; however, using the strategies proposed here, AKP under the age of 18 years can be involved in research and still be protected from undue harm. Countries enacting laws allowing adolescents to access HIV testing without parental consent may serve as leverage to argue the benefits of conducting research among AKP without parental consent, as long as there are sufficient ethical protections and access to needed care and treatment.
During the past decade or more, HIV prevalence and associated risk behaviors among adult key populations worldwide have been successfully measured using innovative sampling methods including TLS and RDS. However, it is unclear why the lessons learned from surveys of adult key populations are not being harnessed to capture strategic information about AKP in existing BBSS or in surveys targeting AKP. In some cases, more time and expense may be needed to capture AKP. Given that survey designs need to be tailored to reach AKP, they comprise a small part of the key populations and may be more hidden than their adult counterparts. Many surveys of adult key populations include adolescents as young as 15 years [
As in most surveys of adult key populations, research among AKP should include the involvement of the research population in the survey planning, implementation, analysis, and dissemination. Researchers should endeavor to provide avenues to involve adolescents, especially AKP, in all phases of research as such involvement will increase their ownership of the data collected and a higher likelihood that the findings are used on their behalf to develop more useful national HIV testing, treatment, care, and support strategies. When designing research, adolescents may have insight into current behavior trends such as which drugs are being used and which venues are being frequented by AKP, and which tools and language will be most effective. In addition, older adolescents can be included as part of the data collection and analysis team. Future directions for sampling AKP could include developing novel data collection strategies such as using game interfaces with colors, sounds, and levels of earning points when responding to questionnaires in an effort to keep adolescents engaged. As more BBSS’ are conducted among AKP using TLS and RDS, it is hoped that additional lessons learned will be shared to ensure the most optimal implementation and adaptation of these methods to sample these underserved high risk populations.
Despite the fact that deaths due to AIDS continue to increase for adolescents, while they have decreased for all other age groups since 2010 [
acquired immune deficiency syndrome
adolescent key populations
biological behavioral surveillance surveys
human immunodeficiency virus
males who have sex with males
respondent driven sampling
time location sampling
None declared.