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Dominick Shattuck, PhD, is a social and behavioral health scientist at FHI 360. Dominick has previously shared his reflection on Magic’s HIV announcement on FHI 360’s “Degrees” blog.

Recently, I was reminded that my research on HIV started 20 years ago and at the time, I didn’t know it. November 7th, 1991 was the day that Magic Johnson announced that he is HIV-positive.

That afternoon, my five roommates and I, all college athletes, huddled around the TV watching ESPN in disbelief. Magic was the main combatant to our beloved Larry Bird, but respected as a basketball icon with a warm smile and an undeniably great personality. We hated what he did to our Celtics, but nobody could hate Magic Johnson. As we sat in the dorm and listened to Magic tell us that he was HIV-positive, a strange discomfort set in among us that was based in a few different things: 1) our ignorance of HIV, 2) our denial that this could happen to someone we knew (because a young person’s attachment to an icon is real), and 3) our misunderstanding that being HIV-positive meant almost immediate death.

In the weeks that followed, Magic’s announcement was a part of our conversations. We discussed the reports of his numerous sexual partners, the stigma he faced from other players (i.e., Karl Malone) and all the pills he needed to stay alive. Later, we watched in awe as he played basketball again at the highest level and on more than one occasion forced governments (such as Taiwan) to make an exception to their visa policies. At the same time, our dormitory brought in HIV-positive speakers, young people, our age who contracted the infection through sex or drug use. Many of the speakers were far less healthy than Magic Johnson. And condoms became part of our regular conversation about sex. After Magic’s announcement, we talked about using them, in our own way, for more than pregnancy avoidance.

Today I thought I would take a few minutes to remind folks of this event because I feel it’s relevant to our work and likely a relative experience that we all shared in different contexts. If you’re less familiar with how newsworthy Magic’s HIV status announcement was, you can read this ESPN article or watch the documentary, “The Announcement.” The article provides the following quote, which gives a small glimpse of the impact Magic’s HIV positive status had on our country in 1991, “It’s the first time I’ve ever seen reporters crying.”

Twenty years later, Magic is alive and doing well thanks to his drugs, great medical care, healthy lifestyle and a positive attitude. Although the focus of our work does not target celebrity athletes with worldwide appeal, those things that keep Magic alive and the impact of his announcement are relevant to our work. They also reflect changes in attitudes and behaviors toward HIV that many people never imagined could happen.

Greg Louganis is a gold-medal-winning Olympic diver and author. He tested positive for HIV in 1988 and has become a prominent and inspirational activist.

It has been almost 25 years since I was diagnosed with HIV. At the time the only drug we had available for treatment was AZT. The prescription for AZT was two pills every four hours around the clock. It’s a bit of an understatement to say this was not conducive to a good night’s rest while I was in training for a challenge of a lifetime, the Olympics.

Dealing with HIV was, on a daily basis, a physical and emotional challenge.  The fear, the shame, the pain were, at times, almost more than I could bear.  But then, it’s not really in my makeup to give up.

Ten years after I was diagnosed, I thought I would have to say good-bye to my friends and family. I was wasting away to almost nothing. Alone, I boarded a plane and flew thousands of miles from my home, where I checked into a hospital under an assumed name. To my good fortune, my doctors found the treatment to address the fungal infection in my colon and I recovered! But the next issue to face was how the heck to pay those enormous bills?! I didn’t claim it on my insurance as I was afraid of anyone finding out about my diagnoses.

I also survived the Protease Inhibitors treatment – not an easy ride! But it gave hope to many who were failing on other medications.

Now today, holy moly.  I can’t believe I’m here.  And the longer I live the more exciting my life becomes.  So many new adventures before me and I am looking ahead fearlessly!

While it is comforting to know HIV is no longer necessarily a death sentence, I would be negligent if I did not address prevention.  I wouldn’t wish my drug regimen on anyone… the side effects, not to mention the cost. Thankfully, the treatments are MUCH more tolerable and there are choices now.

I have spoken with quite a number of young, newly diagnosed men, and the first questions they are plagued by are “Why?” and “How?”  Accidents happen. In the long run, does it really help to let yourself go there?  It just “is.”

On a practical note, the one thing my HIV has taught me is the importance of exercise to help me tolerate my meds. I think my workouts are as important as the meds themselves. Also, I alleviate stress in my life; stress kills! I also spend time trying to tweak my thinking, looking at – and accepting – what I can change and what I cannot. It’s simple enough and it becomes easier the more I practice it!

The fact is I live with a virus called HIV; it is a part of me, like an old friend. At times we challenge each other.  But it’s clear to me now that those questions “How?” and “Why?” are irrelevant.  They do not support my constitution; they inhibit my growth as a human being.

Though it may be cliché, I actually am thankful to my HIV; it has given me perspective and pushed me to pursue my passions because I don’t know how much time I have left on this earth.  I have truly learned to appreciate every day.  While I was expecting to be gone within 5 years of my diagnoses, it has now been 25 years and the light of my life has never been brighter. I have someone with whom to share my adventures, and amazing opportunities for the future!

I have been incredibly blessed to have had such strong support and understanding as I’ve told the world about my HIV.  Yes, I have my haters, but I give as little energy to those people as I possibly can. And I practice choosing words that are supportive to myself and others. I do my best not to participate in gossip and trash talk because I am sure it affects my T-cells.  It’s easy to spin in other people’s stories, but it’s also pointless.  And, it’s exhausting!

That’s not to say all stress is bad…. I am a bit of an adrenaline junky.  Now in my 50s, I’ve taken up trapeze, and next year, I’m looking forward to an incredible SCUBA diving trip and a sky dive!

Awareness is my path. Do the people around me make me feel good? They can stay! Those who seem like a black hole and bring me down, I let them go. It’s been a long road to get here, but now that I’m here, I’ve chosen a joyous and happy life!

No one knows how long we have, so all we can do is be at peace with ourselves and make the most of our opportunities. I never thought I would have such a wonderful impact…to be able to try to make everywhere I go better because I was there… to have a purpose! Actually, don’t ask what my purpose is, because it shifts as events present themselves. But right now, it has to do with living outside of myself and being in service to others.

It’s been 25 long years filled with trials, adventures, lessons, and ultimately – at last – love.  I love my life so in turn, I love my HIV; it is a part of me but doesn’t define me.

“The Stories Behind the Statistics” is a series we developed for the Gates Foundation blog, “Impatient Optimists.” The following post is the second in our on young people and HIV. The original post, located on “Impatient Optimists,” is available here. John Mwikwabe is a peer educator with the Kenya Red Cross Naivasha Sub Branch.

In a country where half of its population lives below the poverty line and many people make less than a dollar per day, life can be challenging. Many families struggle just to put food on the table. The responsibility to be the breadwinner, traditionally borne by parents, is extended to all family members.  Children are forced to contribute to running the households, often before completing their primary level studies. Many young people find it difficult to get well-paying jobs, and often end up opening up “vibandas” (small vendors shop) to sell vegetables and groceries. In Naivasha, where I live, I see more and more young girls entering into sex work. As a peer educator, I have worked with some of the girls, their classmates and their neighbors and from them have learned staggering information.

“At first I just wanted to help at home, earn some money and save enough to help my mum. But later I realized I could buy whatever I wanted and that felt good for a change.” –  13-year-old female who is involved in sex work

The young woman quoted above is a standard 8 pupil at a nearby primary school. Her mother is fully aware of her daughter’s night shift duties but feels there is little she can do. Often, her daughter can bring home Kshs. 1,500 to Kshs. 2,500 (about $16-27 USD) in one night. The mother had to divorce her husband because of his heavy drinking and sees her daughter’s work as their family’s life-line despite the risks her daughter is exposed to.

I have seen other young women become involved with older men to supplement their family’s incomes; these types of relationships also increase young women’s vulnerability to STIs and HIV. There is a huge gap in providing these young girls who are in school, especially in primary school, with relevant information on prevention messages. There have been programs, but they often occur on the weekends when many adolescent girls go to visit their “clandes” (men who have money and are married).

As a peer educator, I mostly work with out-of-school youth—however even for those in school, comprehensive sexuality education is not available.  The gap in available information about HIV risk impedes the war against HIV and AIDS and the promise of a brighter future for adolescent girls. Young people, and especially adolescent females, need information about reproductive health services and HIV prevention so that they are empowered to make informed decisions concerning their lives.

“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.

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.”
-LoveLife

“Many girls are not ashamed of MCP (having multiple partners), but actually happy that they are beating the boys at their own game.”
-FLAS

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 Fcover of Promoting Partner ReductionLAS 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.
-FLAS

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.

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.

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.”

Last week, young people, people living with HIV, policy-makers, donors, researchers, program developers and many others working in the field of HIV gathered for the International AIDS Conference in Washington DC.  Youth was a major theme at this year’s conference, which emphasizes the importance of young people’s role in reversing the HIV epidemic.  We have put together the following recap of select FHI 360 youth-related presentations, conference declarations, links to blogs that provided live coverage, and daily bulletins to highlight some of the exciting events and outcomes from this landmark conference.

Selected FHI 360 Youth Poster Presentations:

Following are links to select poster presentations from the International AIDS Conference that highlight FHI 360’s innovative work with young people in the field of HIV.

“Positive Connections: Leading Information and Support Groups for Adolescents Living with HIV”

“Feasibility of Recruiting Adolescent Women into a Mock HIV Prevention Trial”

“Do Adolescents Under 18 Years Old Warrant Inclusion in HIV Prevention Clinical Research?”

“Domestic Violence Among Young Women in Tanzania: Participant Experiences and Measurement Issues”

Youth Declaration for Change:

As part of the youth pre-conference events the Washington DC YouthForce and CrowdOutAIDS/UNAIDS invited young people to develop a list of priority HIV responses. These responses were compiled to create The Declaration for Change, a document intended to advance the vision for an AIDS-free generation. Visit the Declaration for Change website to learn more about this initiative.

Washington D.C. Declaration:

The Washington D.C. Declaration, initiated in partnership with the International AIDS Society; the International AIDS Conference; and the University of California, San Francisco; is a commitment to work toward ending the AIDS epidemic. Learn more about the Washington D.C. Declaration here.

Live Blog Coverage:

FHI 360’s Degrees blog and the Washington Post both provided daily live coverage of the conference events.  Check out the archives to see the highlights.  

AIDS 2012 Daily Bulletins:

International AIDS Conference organizers released six daily bulletins proving an overview of conference events. You can access all six bulletins here.

This is the fourth post in our series, Adolescent Girls, Microbicides, and HIV Prevention Trials.

Photo by Anna Kaale (Study Coordinator) of a 17 year old study participant

A primary objective of the study titled “Adolescents Women and Microbicide Trials: Assessing the Opportunities and Challenges of Participation” is to determine how well-suited adolescents ages 15-17 are for participating in future HIV prevention trials. Usually HIV prevention trials, including microbicide studies, enroll participants ages 18 and older.  As part of our mock clinical trial (MCT), we asked the young women who completed the study about their experiences as study participants during their last visit.

Thus far, 135 adolescents and young women (ages 15-21) have enrolled in the MCT, and 23 participants have completed 6 months of participation.  Among participants who completed the mock trial, the vast majority felt very positive about their study experience, none felt stigmatized because of their participation, and two-thirds had told someone else that they were part of this study.

We asked the participants what they liked about participating in the study.  Responses included, “I learned a lot of things, especially about how to protect myself from HIV and pregnancy,” “They educate, they counsel and they do not favor or discriminate against anyone,” and “I was very happy because I got a chance to know my health status.”  A number of participants felt that regular HIV, STI, and pregnancy testing was a benefit, although a couple said they did not like the pelvic exams which were required for STI testing.

However, among the 135 enrolled participants, about 68% experienced challenges to their continued participation.  Twenty participants (15%) attended the baseline visit but no other visits, and another 72 (53%) missed at least one visit.  Our research team followed up with participants who had either purposefully dropped out of the study or who had not returned for their follow-up study visits. We wanted to learn why they dropped out and to understand any difficulties they experienced remaining in the study. 

With community-based follow-up, our team discovered that a number of participants had either moved away or they were in school or working during the week, which made it difficult for them to come to the clinic for their study visits.  Others were afraid to continue participating because of misconceptions about the research study.  For example, one participant acknowledged that she understood follow-up visits were important for the study goals but she stated, “for me it is not important because I thought you wanted to remove my uterus.”  The experience of a first-time pelvic exam was scary for some girls and it highlights that adolescents need counseling both before and after the exam to ensure they understand how STI testing works.  Other girls were reluctant to continue with the study because, for example, they did not like answering so many personal questions, but were afraid to tell the study team that they wanted to drop out. Interviewer: “If you were to tell us that you did not want to come to another clinic visit, what did you think would happen?”  Participant: “I didn’t think anything would happen but I was scared and I decided to keep quiet—I thought you would look down on me.”  This quote illustrates that girls are keenly aware of the potential of disappointing a researcher or of being judged. Therefore, careful attention should be paid to reassuring adolescents that their participation is voluntary and all information that they share with researchers, including reasons for dropping out of a study, makes a valuable contribution to the study. 

 

Globally 5 million young people are living with HIV and this number is rising as children who are prenatallyinfected gain access to life-prolonging ARV treatment and new infections among youth continue.  In 2009, 370,000 babies were born HIV-positive; approximately 2,500 young people are newly infected with HIV daily. For many, HIV has become a chronic disease that necessitates lifelong treatment, care, and support. FHI 360 on behalf of USAID’s Interagency Youth Working Group will deliver two presentations at the 2012 International AIDS Conference focusing on the unique needs of young people living with HIV, and on the provision of ongoing, supportive counseling and sexual and reproductive health information.

On Sunday July 22, 2012 from 9:00 to 11:00am in Mini Room 2, FHI 360 will participate in a USAID-sponsored satellite session titled, “Journey of Life for Children Living with HIV: From Diagnosis to Adulthood.” This session will introduce several new tools and resources to address critical issues that youth living with HIV face along their continuum of care, including disclosure, adherence, retention, relationships, and sexuality. The goal of this session is to present the current evidence, best practices, and tools, and provide a forum for discussion and youth voices. (For more information about the satellite session, click on the image of the flyer.) Then on the 26th, from 12:30 to 2:30, FHI 360 will give a poster presentation on an innovative new tool, titled “Positive Connections: Leading Information and Support Groups for Adolescents Living with HIV,” designed to assist adult facilitators in starting and leading information and support groups for young people living with HIV.  Positive Connections will be available in the fall of 2012.

If you are attending the International AIDS Conference, please join us at these two exciting events!

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This blog is brought to you by the Interagency Youth Working Group (IYWG) with financial assistance from the U.S. Agency for International Development and the U.S. President's Emergency Plan for AIDS Relief. The content is managed by FHI, which functions as the secretariat for the IYWG.
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