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“The Stories Behind the Statistics” is a series we developed for the Gates Foundation blog, “Impatient Optimists.” The following post is the first in our series on young people and HIV. The original post, located on “Impatient Optimists,” is available here.
In the approximately two minutes it will take you to read this post, four young people will become infected with HIV.
Five million young people are living with HIV, and youth (ages 15‒24) account for 41 percent of all new HIV infections. Approximately 79 percent of new HIV infections among youth occur in sub-Saharan Africa, and adolescent females make up more than 60 percent of all young people living with HIV. Young men who have sex with men, young people who sell or trade sex, and young injecting drug users are also disproportionately affected by the HIV epidemic.
There are many factors that contribute to the high rates of HIV among young people including lack of appropriate sex education, lack of access to condoms, economic disparities, sexual violence, early marriage, stigma surrounding HIV, lack of access to counseling and testing, and criminalization of risky behaviors. Globally, only 34 percent of young people ages 15‒24 have a comprehensive understanding of how HIV is transmitted. Many young people living with HIV do not know they are infected; stigma associated with HIV infection can prohibit young people’s willingness or ability to seek testing. The behaviors of adolescents most at risk of HIV infection (young people who inject drugs, young people who sell or trade sex, and young men who have sex with men) are also often stigmatized or criminalized, which further marginalizes these young people, undermining their self-efficacy, their confidence in health and social services, and their willingness to make contact with service providers.
Income and gender inequality, sexual violence, and harmful traditional practices like early marriage, also fuel the HIV epidemic among adolescent girls. Economic disparity can lead to involvement in cross-generational or transactional sexual relationships, which limit young people’s ability to negotiate condom use and increase the likelihood of multiple partners and sex with older partners. Married adolescent females have little to no decision-making power related to condom use or sexual activity. In developing countries, 80 percent of unprotected sex among adolescent girls occurs within marriage. In some settings, young married girls (ages 15 to 19) have been shown to have higher rates of HIV infection than sexually active unmarried youth of the same ages.
HIV is preventable, but to halt the epidemic, young people need access to information and the tools to protect themselves. These include condoms, counseling and testing centers, and other preventive services. Interventions that provide young people with opportunities to stay in school, develop life skills, and avoid early marriage are essential to addressing the risk factors that increase young people’s vulnerability to HIV infection. The 2,500 young people who are infected with HIV every day are a glaring example of the insufficient attention to HIV prevention among this population. Young people deserve better.
In the next post in this series, we will hear from one young person in Kenya, about the factors that contribute to HIV among young people in his community and what he sees as the necessary solution to the global HIV pandemic among youth.
This is the fifth post in our series, Adolescent Girls, Microbicides, and HIV Prevention Trials. It was written by Ms. Doreen Bangapi, community recruitment officer. Ms Bangapi and Dr. Sylvia Kaaya, local principal investigator, are with Muhimbili University of Health & Allied Sciences (MUHAS) and work with FHI 360 on the study.
A total of 135 participants, ages 15 to 21, have been recruited and enrolled into an ongoing mock clinical trial as part of the study entitled “Adolescent Women and Microbicide Trials: Assessing the Opportunities and Challenges of Participation.” A number of strategies have been used to recruit these adolescents and young women including information sessions for potential participants organized through community and ‘girl power’ meetings, meeting with students at their schools, word-of-mouth to relatives and neighbors of the study staff, and recruitment of regular clinic clients of the Infectious Disease Centre (IDC) where the study is being conducted. Other strategies included working with FHI 360’s local Tanzanian partners through NGOs and representatives who work with adolescent girls in the community. In addition, some study participants recruited their friends, relatives and neighbors.
Locating interested participants is only the first challenge; there are also special logistical issues related to adolescent participation. For example, many potential participants lacked bus fare/transport to get to the clinic because they are financially dependent upon their parents or guardians. Others didn’t have a phone, which made it difficult to schedule clinic visits. All of this was complicated by the fact that many participants did not want to disclose their study participation to parents or guardians and therefore could not ask for their assistance.
One recruitment strategy that was helpful for some participants was group recruitment. While many participants were recruited as individuals, others were recruited as a group. Some of the groups were comprised of friends from a neighborhood, others of classmates from school, others of a mix of friends and strangers recruited through a community information session. The group dynamics of coming in with friends or school peers was particularly supportive to the recruitment process.
Another helpful recruitment strategy was providing transport for some participants for baseline visits. Local daladalas, or mini buses, were hired to bring potential participant groups to the clinic for study information sessions, including viewing a video by the International Partnership for Microbicides (IPM) about microbicides trials. For other participants, a community recruitment assistant helped transport potential participants to the clinic through public transport by paying their bus fare and accompanying them to the clinic.
Once potential participants reached the study clinic, determining study eligibility was particularly challenging. To be eligible for the study, the young women needed to be between 15 and 21 years old, HIV negative, not pregnant and not wanting to have a child within the next 6 months, sexually active in the past three months, and able to attend the clinic for scheduled appointments. While pregnancy testing was not an issue for the young women, some were not willing to get tested for HIV—especially those who came from high-risk populations, such as commercial sex workers. Age verification was the most challenging aspect for determining eligibility. Many young women do not have documents like birth certificates, voting cards, health facility cards, or school records that could verify their age. Study staff therefore had to (1) ask participants to complete an age verification form that asked a series of questions to help validate self-reported age and then (2) call a trusted adult who was familiar with the girl’s age for verification without revealing that the girl was participating in the study.
Once a participant is recruited into the study, retention is the next challenge. Our study staff are working hard to retain participants by calling them and making home visits. Other strategies include picking up participants from home and bringing them to the clinic for follow-up visits, informing them how important it is for them to attend their scheduled appointments, and explaining that the follow-up visits are shorter than the baseline visit. Some of the retention challenges include high mobility among adolescents (moving in and out of the city), loss of phone contact, and loss of peer support when a friend becomes ineligible to participate in the study at a follow-up visit (for example because she became pregnant between baseline and follow-up). In summary, recruiting and retaining adolescents in a clinical trial can be challenging, but with special effort by the study team, they can be successful participants in HIV prevention trials.
Marta Pirzadeh is a technical officer on FHI 360’s Research Utilization Youth Team.
Multiple and concurrent partnerships, “the big house,” “spare tire,” and sugar daddy—these are just a few of the terms used to refer to multiple sexual partners. Even though there are many ways to refer to such partnerships, the risk is the same: within a large sexual network, HIV is spread more quickly and entire communities are being affected. In South Africa and many other countries with generalized epidemics, the high HIV prevalence rates are caused in part by people having unprotected sex with multiple partners, especially when those sex partners are concurrent. But, what causes young people to engage in such risky behavior when they know the consequences? Doesn’t everyone know that if you have unprotected sex with multiple partners, you are putting yourself and others at increased risk of contracting HIV? It seems simple, but I learned on a recent trip to South Africa, that it’s much more complicated than you would think.
“Most youth living in urban areas or townships, they engage in MCP because they think it’s cool…even though they know the risks.”
“Many girls are not ashamed of MCP (having multiple partners), but actually happy that they are beating the boys at their own game.”
The list of reasons why young people have multiple sexual partners is long and multifaceted. Although it varies by individual, community and country, common themes appear when young people are asked about this risky behavior: the influence of their peers and role models, the desire for emotional or sexual satisfaction, to receive gifts, as a reflection of gender norms, the influence of alcohol or drugs, as a “ticket out” of poverty, the impact of transactional sex (having sex in exchange for something you want or need), cultural expectations, love, lust…and on and on. How can youth programs even begin to combat this extensive list? What tools are available to help young people understand the increased HIV risks associated with having multiple partners?
Partner reduction has been identified as an important approach to decreasing the risk of HIV transmission at the individual and population levels. Having fewer lifetime partners is strongly associated with a reduced risk of HIV infection. Yet, even though multiple sexual partnerships are a major driver of the HIV epidemic, this topic is often inadequately covered in HIV prevention curricula for young people. During a recent trip to South Africa to provide training to youth program staff, my primary questions were: “Is your program addressing the importance of partner reduction?” and “What resources do you have to educate young people on this topic?”
Youth program staff from LoveLife, South African Council of Churches (SACC), Family Life Association of Swaziland (FLAS) and AMICALL-Swaziland attended a training that I facilitated on a new educational tool developed by FHI 360 and ETR and funded by USAID. Promoting Partner Reduction: Helping young people understand and avoid HIV risks from multiple partnerships (PPR) was designed to supplement existing YSRH/HIV programs, and I had the incredible experience of introducing this set of activitiesto these four programs. All four programs are already doing the hard work; they are providing support, life skills training, YSRH and HIV education to young people in some of the communities at highest risk for HIV infection in two countries with some of the highest rates of HIV in the world. Yet, they were not discouraged by these overwhelming circumstances; rather, they were eager to learn new skills and excited about sharing the activities with program participants. During our training and discussions, they admitted the risks associated with having multiple sexual partnerships are often overlooked. As one FLAS staff person stated, “Prior to the training, we did not have a specific tool that focuses on addressing partner reduction. It was not discussed in detail in our program.” There was general consensus that multiple sexual partnerships are common among young people but they don’t have the information or resources to address it, so the topic is provided very limited coverage. We hope that by introducing this set of activities, they will be able to integrate them into their already successful programs. It’s a lofty goal; sexual partnerships are complicated and the reasons that young people are involved in them are often even more complex, but perhaps by providing simple activities and guidelines to a few programs, we can begin to see a change.
My trip to South Africa was a small part of an ongoing assessment of PPR. Over the next three months, all four programs will pilot select activities to gauge youth response, and facilitators will be interviewed about their experience. From their experiences, we hope to begin to understand program gaps and learn how we can expand the reach of partner reduction activities to other programs.
It’s a big topic that needs to have its own time. It’s a socialization topic, it’s a sexual topic. You cannot talk about MCP without talking about gender, society, etc. As much as it can be integrated within existing program, there needs to be time that is set aside just to deal with MCP.
Promoting Partner Reduction: Helping young people understand and avoid HIV risks from multiple partnerships will be available through www.iywg.org in the late fall of 2012.
This post, written by Percilla Obunga, FHI 360 project management specialist on gender and girls’ education in Kenya, originally appeared on FHI 360’s Degrees blog, and can be accessed here.
For the last four years, the Four Pillars PLUS project has been working with girls of primary and secondary school age in Kenya to address the complex barriers to achieving their educational success. The project is funded by the General Electric Foundation for the years 2008–2015. Using the Four Pillars strategy — scholarship, teacher professional development, mentoring of girls and community participation — notable changes have been realized in girls’ enrollment, retention and completion at the primary school level and in their improved performance, transition and retention at the secondary school level. The community has gradually accepted and supported the important role of girls in society, and teachers too are motivated to use the gender lens in achieving success in educational programs.
It has been a long journey to work with the girls as they go through so many challenges in life. My personal experience in working with communities has been challenging and rewarding at the same time. Communities — especially those with cultural barriers to girls’ education — need to be involved from day one, and throughout all the stages of project implementation, if support of the girl child is to be effective. Additionally, girls need to be empowered to know and believe that they are not inferior. That is why the Four Pillars PLUS project collaborates with women role models who represent hope and support as they mentor girls on life skills, good decision making, healthy choices and reproductive health issues. This approach has helped girls make greater strides in achieving educational success.
Creating lasting changes in the lives of girls has always been at the forefront for the Four Pillars PLUS team and, indeed, it continues to be a rewarding experience to see future productive women in our society. The girls are working hard in school, teachers are very committed to ensuring good performance and school administrators all join hands to make the school environment friendly to the girl child.
The Four Pillars PLUS strategy is a holistic approach that has proven to work wonders in improving educational outcomes for girls and other vulnerable children in the society.
According to the UNFPA, girls in developing countries who receive seven or more years of education marry, on average, four years later and have approximately 2.2 fewer children.
Jennifer Redner is a senior program officer, U.S. foreign policy, with the . Her work focuses on achieving a just and healthy life for all women and girls and building awareness and increasing support for the development and implementation of comprehensive and evidence-based sexual and reproductive rights and health policies and programs. She is a leader in a number of advocacy and technical working groups and coalitions, including serving as co-chair of Girls Not Brides USA and the Coalition for Adolescent Girls.
Today, celebrations across the world are taking place to mark the first ever UN International Day of the Girl. We have come a long way in recognizing the importance of addressing the most pressing needs of adolescent girls (ages 10‒19). But there is a growing urgency to translate this political will into action and to achieve meaningful and measurable improvements. Hundreds of millions of girls around the world simply cannot and should not have to wait any longer to receive the information, services, and support they need to exercise their human rights and realize their full potential.
Many young women have been able to avoid or escape a life determined by others and are now working to realize a different life for their daughters and other girls in their community. The young women of APAD, a survivor-led organization focused on ending early and forced marriage in the far north region of Cameroon, are one such example. They are a testament to resilience amidst seemingly insurmountable obstacles, such as the lack of power to make decisions about getting married, having sex (or not), childbearing, staying in school, accessing social and economic assets and other basic rights that many of us take for granted. They know what’s needed in their community to help other girls avoid the human rights violations they themselves have had to bear. We should prioritize the support of local indigenous organizations like APAD to realize the change they seek for themselves and their community.
Unfortunately, millions more find themselves condemned to a life stripped of opportunities to grow, learn and survive, let alone thrive. We must collectively ensure that girls, and in particular very young adolescents (10–14 years old), are not underserved and unrecognized by policies and programs. In fact, as we learn more about the experiences of girls, it is becoming increasingly clear how critical it is to reach them before they turn 10 years of age and before they first experience violence, including forced sex; unintended pregnancy; and lost educational and economic opportunities.
We will only be able to reach our global development goals by prioritizing investments in married and unmarried adolescent girls. The solutions require investments in the development, implementation and monitoring and evaluation of evidence-based and multisectoral approaches implemented at the community level and with the protection of sexual and reproductive rights and health at their core. Specifically, the United States must:
- Work with other donors and national governments in sub-national districts to provide national governments and local organizations with technical and programmatic support to design and implement new programs, and better evaluate and scale existing programs.
- Increase efforts to work directly with girls and their families and communities to provide married and unmarried adolescents with the social, economic, health and human rights information and services they need to prevent child marriage and mitigate its harms.
- Integrate activities for preventing early marriage and for helping married adolescents into existing programs, including those focused on improving outcomes related to maternal health, HIV/AIDS, economic empowerment, food security, and education.
Through communication, collaboration and coordination among a range of stakeholders, we can galvanize the political and financial commitments needed for the policies, programs and research required to secure a just and healthy life for married and unmarried girls. Broad-based constituencies such as the Coalition for Adolescent Girls and Girls Not Brides are ready, and the International Women’s Health Coalition is working as a leader in these coalitions and with other key stakeholders, including local organizations such as APAD, which is leading the charge for change in their community. Will you seize the opportunity before us as we celebrate International Day of the Girl and join us in making sure that girls have a choice and a chance to make decisions about their own lives and fulfill their unlimited potential?
Marta Pirzadeh is a technical officer on FHI 360’s Research Utilization Youth Team.
At the height of the U.S. “AIDS crisis” in the late 1980s and 90s, I was a college student volunteering at Planned Parenthood in upstate NY. At that time, I could not imagine that I would end up in South Africa working with HIV youth programs more than 20 years later. But, that’s exactly where I was a few weeks ago. Youth program staff from LoveLife, South African Council of Churches (SACC), Family Life Association of Swaziland (FLAS) and AMICALL-Swaziland attended a training that I facilitated on a new resource developed by FHI 360, Promoting Partner Reduction: Helping young people understand and avoid HIV risks from multiple partnerships (PPR). This was my first trip to Africa, and although my role was to provide training to the participants, I am the one who learned something. If you have ever traveled to South Africa, you know the countryside is awe-inspiring, the historic struggles for freedom are still apparent and the people are warm and welcoming. But, my experience also served as a reminder of the path that brought me to this point and may resonate with you, as well.
Like most public health professionals, the reasons I entered this field were noble. I was an enthusiastic college student being introduced to public health at a very exciting time. I felt like I was making a difference. I did street outreach; gave out condoms in gay bars, bus stops and hair salons; I led HIV prevention programs in prisons, low-income housing communities and clinics. This is the same kind of work that the participants who attended my training are doing in South Africa and Swaziland now. But times have changed, HIV rates in the U.S. have dropped dramatically and I fear that many people think that AIDS is no longer “our problem”(of course, we know that is not true). Things have changed for me, too. Now, I sit in a third floor office of a mirrored building at FHI 360 headquarters in Durham, NC. I attend international conferences and work with some of the most influential public health leaders in the world, yet my trip to South Africa reminded me of why I continue to be inspired by this work.
At the end of my trip, I had the opportunity to spend a day with loveLife staff and program participants in Orange Farm, an informal settlement outside Johannesburg. Orange Farm is the biggest and most populous informal settlement in the country, home to nearly 350,000 people—mostly living in shacks, often unskilled, scraping out a living day-to-day. But, I saw a much different side of Orange Farm. Unlike other informal communities, which consist largely of dilapidated dwellings, many shacks in Orange Farm are well-maintained and colorful, with tidy gardens. Despite their circumstances, the residents clearly take pride in their community. I had the opportunity to visit loveLife programs at a clinic, local school and youth center. At the youth center, I met peer educators (called “groundBreakers”) with that spark in their eyes. You know the spark: you’ve seen it and perhaps experienced it. I know I have….it’s the belief that you alone can change the world. Here they are, living and working with limited resources and innumerable obstacles and yet, they are not daunted by the task at hand. Like the rest of us in the HIV prevention world, their goal is to contribute to an HIV-free generation, not just in Orange Farm, across South Africa or Swaziland, but globally. They are doing their part, and they reminded me that I am doing mine.
The truth is, we can all benefit from a reminder every now and then. I came back to my office reinvigorated, inspired and motivated to continue to support programs in developing countries with the tools that will help them do their daily work: educating and inspiring young people the same way I did on the streets, in the bars and clinics so many years ago. I was reminded that we all have a role to play. It’s easy to become complacent or to sit in my comfortable office wondering if what I am doing even matters. But, the reception I received from the youth program staff in South Africa told quite a different story. They were desperate for new resources and excited to have the opportunity to learn. Although I was there providing training and technical assistance to them, I am the one who returned with an education. After 20 years of working with public health programs in the U.S., the two weeks I spent in South Africa will forever change my perspective. On some level, I feel like I have come full circle from my volunteer days at Planned Parenthood but on the other hand, I don’t feel like I’ve changed at all. There is still much work to be done, both from my third floor office and on the streets of communities like Orange Farm…and only by working together do we stand a chance of reaching our common goal of an HIV-free generation,”
Next week, Marta will share more about the training and the lessons she learned about young people and multiple concurrent partnerships.
At USAID’s Mini University this year, adolescent health expert Dr. Robert Blum led a session titled, “Adolescent Health: How Far We Have Come, How Far We Have to Go.” During this session, Dr. Blum explained how advancements in science, research and advocacy have improved adolescent health and, yet, how much work stills remains. More than 2.6 million young people ages 10 to 24 die each year; among the 10 leading causes of death among this age group, six are socially determined. Mental health issues are on the rise among young people; approximately 20% experience a mental health problem, and psychiatric disorders are the leading cause of disability among adolescents and young adults. Approximately 5 million young people are living with HIV, and youth account for 40% of all new HIV infections. Rates of adolescent pregnancy are staggeringly high, with 16 million girls ages 15 to 19 giving birth every year. Both malnutrition and obesity are epidemic among youth and tobacco and alcohol use threaten the health of millions of young people. Today’s generation of young people is the largest in history, and these young people face a variety of health challenges that deserve urgent attention.
How Far Have We Come?
The future of adolescent health is not in a state of despair; recent gains in science, research and advocacy have improved understanding of and attention toward adolescent health needs. During his presentation, Dr. Blum highlighted the following:
- We have a much richer sense of data related to adolescent health.
- We have better research, including neurodevelopmental and genetic research.
- We have improved conceptual models to guide our work.
- We better understand the social determinants of health.
- There is more global attention to adolescent health than ever before.
Through advancements in science, we have come to better understand adolescent brain development; we now understand how the brain continues to develop throughout the adolescent years, and how brain development affects adolescent health behaviors. We have a greater understanding of the role of genetics in health outcomes; we have learned that genetic factors alone only account for approximately 5% of disease, whereas most diseases are the combined result of biology and environment. This has shaped our understanding of how to address adolescent health issues and has guided the development of conceptual models that address both risk and protective factors leading to today’s prevailing notion of positive youth development.
How Far Do We have to Go?
Despite these gains there is much more we need to do to fully address adolescent health. According to Dr. Blum we still need:
- Better quality age-disaggregated data
- Improved information on successful interventions
- Improved advocacy
- To move away from the unhelpful mindset of deterrence
- To do the “do-able”
While data and information about adolescent health outcomes have improved much is lacking; specific information about young people is often hidden within national data sets. Along with more data on adolescent health outcomes, we need more data on successful interventions. There is a lack of clarity about what the best approach to adolescent health is. Dr. Blum suggests we push the envelope; he stated that programs “have to have a high tolerance for failure or they are just not doing enough.” We need not only to improve our programs but also to improve our advocacy efforts. Finally, we need to continue to implement those programs that are working. Simple low-cost interventions that are proven successful can vastly improve the health of adolescents. These interventions include providing iron supplements, promoting access to contraception, increasing school enrollment, offering life skills education, encouraging hand washing, and providing vaccination. In the words of Dr. Blum, to achieve improved health outcomes among adolescents, we need to “do the do-able.”
Robyn Dayton is a technical officer on FHI 360’s Research Utilization Youth Team.
Many people, this blogger included, work to create new tools for youth HIV prevention. The result— depending on which listservs you subscribe to—could be news about a new tool in your inbox each week (if not each day).
And quite often, these tools seem extremely useful. But do we know what happens to them after they are sent out into the wide world of the Internet or after hard copies get shipped across the globe? Are the tools we are creating being used? By whom? And, even more importantly, are they making a difference?
FHI 360, with support from USAID’s IYWG, had the opportunity to find out how tools it published to improve HIV counseling and testing services for youth—both a manual for providers (2007) and the associated training guide (2008)—have been used since their release. We were able to talk to users of these tools from all over the world, and we were happy about what we heard. People not only really like these tools (96% of respondents reported satisfaction) and share them (reported by 70% of respondents), they learned from them (almost 100% reported increased knowledge) and changed the services they offered because of them (75% reported changed behavior in clinics). Check out some of their quotations below to get a sense of what else people had to say.
“In Indonesia, there is homophobia. After the manual I no longer judge young people based on this [sexual orientation].” – Indonesian service provider
“At first, before training, I thought of youth as drug users, bad people, now very big friends, nice people who can be used to do good things.” –Kenyan HIV counselor
“Before I was trained, for example, if the youth came out positive I would even scold them – ‘you are misbehaving.’ But after training, I take into consideration their risk behaviors and now I understand what they go through.” –Zambian nurse
What’s more, the impact of these tools goes far beyond individuals—these resources have had an impact at the national level. The manual informed the national policy on HIV counseling and testing in Guyana and was used to create a national curriculum for health providers in Botswana. For the past four years, it has been in use across Zambia to train both nurses and HIV counselors to improve their interactions with young clients. (How these tools are used in Zambia and what program staff have done to make global tools more locally relevant will be described in an upcoming blog post.)
As anyone who has created something they hoped would benefit others can imagine, it was inspiring to learn how these tools have been used and the impact they have had. It was also very informative. We found out which parts of these tools were most helpful, how to make new resources more useful, and how best to get tools into the hands of those who will most benefit from them. Since we were talking directly with people who provide HIV testing to youth, we also got their take on what else is needed— things like support groups for the adolescents they give positive HIV results to—that provide information about what’s necessary in the next generation of tools.
So, whether it is for your own sense of purpose, or because you know that future products will be that much better for it, try to learn what happens after you press “send” on that new tool you’re creating. Feeling inspired to do HIV prevention work is vital, and what can be more inspiring than hearing something like this from a young person in Zambia who encourages other youth to get tested at his clinic: “After the training on the manual everything changed. We’ve managed to overcome stigmatization — not just in clinic but in the community. We are also making our activities better. Our office is always busy now with lots of youth.”