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John Mwikwabe, a peer educator with the Kenya Red Cross Naivasha Sub Branch, interviewed Celestine Ndege, a fellow peer educator, about what it’s like living with HIV and how her status affects her work.

Celestine Ndege during a Red Cross counseling and testing outreach

I first met Celestine Ndege in 2008, which was about the time Kenya was trying to accommodate the masses of internally displaced people, at one of the camps in Naivasha. We were both volunteers with Kenya Red Cross; she was volunteering under the Health Department and I was a volunteer in charge of warehouse and relief.

Since that time, much remains the same: Celeste is still creating awareness on various health issues, educating people about HIV, visiting support groups, talking to couples about various health issues, and counseling. She lives in Gilgil District but her work takes her across the country. 

Celestine is a mother of two daughters.  She is very strong-willed, and her determination has made her a great inspiration to both the young and to the community at large. There is one thing that makes her special apart from being an agent of change in her community: she has been living with HIV for the past 10 years.  She has managed to live a very positive life regardless of her status and only started using ARVs a month ago after her doctor advised her to do so.

As long as I’ve known her, she has never had any problems revealing her status to the public; she speaks out about it and shares her experience with anyone who lends her an ear.  We have engaged her in most of our counseling and testing initiatives through theater, life skills seminars, HIV and AIDS initiatives, and as a counselor.

Celestine Ndege during a Red Cross counseling and testing outreach

When I approached her about sharing her story on this blog, I had no doubt that she would be thrilled about it, and I was not wrong. We wanted to share her story so that people living with HIV and AIDS would be inspired to know that it is not the end of the world. We also hope that Celeste’s story will encourage people to stop stigmatizing those who are living with HIV and AIDS.  And finally, we hope that those who do not know their status will gain the courage to get tested, with the knowledge that whatever the results are, they can also deal with their status and live a long life.

I had a chance to ask her the following questions.

How long have you known you are HIV positive?

Celestine: For the past 10 years. I have lived a healthy life taking into consideration that I just recently started using the ARVs this year due to some health issues.

How did you discover that you were HIV positive?

Celestine: I used to have a recurring history of STIs, and every time I got one, I would get some medication for them. One day, though, I decided to go for testing and actually learn my HIV status. I had a rough marriage then, and my husband wasn’t the trusting type so I decided to get tested for my sake and the sake of my family. So one day, after a long discussion with myself, I got up and visited a VCT center, and that is how I found out.

Why did you decide to disclose your HIV status?

Celestine: After going through all the stages of depression, denial and anger, I realized that keeping it to myself would somehow lead to self destruction. So I decided to share my story, and of course it was not easy. Doing so was perhaps the hardest thing that I have been faced with.  Stigmatization was high in Gilgil and the whole country, so you can imagine how this would have an impact in my life. But I decided that since I had the infection, I had an opportunity to bridge the gap in the way people perceived things and this was that moment. I saw this as one part of my healing process, so I decided to share my status with the world.

How did your first disclosure happen? Was it voluntary, coerced, planned, unplanned? Did someone disclose your status –with or without your consent?

Celestine: The first time I disclosed my status, it was scary and a little embarrassing but I did it willingly. I was not sure how to do it. My husband had been against going to the VCT to get tested. I recall during that time we had been in a quarrel and I had gone to stay with my sister.  I asked him to go with me toNakuruPark for an outing, and that was when I told him I told him.

As for my kids, they came to find out in a way that I had not planned for. We had a fight with my husband and he blurted it out during our confrontation; my son heard him say that I was HIV positive. My son would later ask me what his dad meant by that and I had to tell him. I had been struggling with the thought of telling them what was happening and that was not how I had hoped I would tell them.

Why did you decide to become a peer educator?

Celestine: Well, I went through a lot in my early years with this infection: emotionally, physically, mentally, my whole life was changed by all of this. My friends looked at me differently; the society (then) did not accept me. My husband has never gotten around to accepting me. I still get stigmatization in my own home from my husband. I had two kids, and all of the sudden life had to be different. I gained strength from close friends and from getting the right information on how to deal with the infection; I am sure that these are the reasons that I am here.  So I thought of my peers, those who are younger than me or even older. I thought about the type of hardships they are going through and how myths and beliefs and misconceptions have contributed to their stigmatization.  And I decided I had a story to share and people to reach out to.  The problems I went through…I would not wish them on anyone, and I wanted to be a source of information and solace.

Do you think your HIV status affects your work as a peer educator either positively or negatively? If so how?

Celestine: Definitely positively. People need to see and hear things they can relate to, and by sharing my story, I empower the youths with information from a real case scenario of how a person lives with HIV and AIDS. By being positive myself and speaking freely with them, I am always sure that I will have their full attention.

What are your greatest peer education successes?

Celestine: Since I publicly shared my status, more youths have had the courage to get tested. Some who test positive know better how to deal with their current situation. That has been a source of strength for me—knowing that revealing my status has brought about positive change among the youths and my peers.

What have you learned from the young people you work with? What do they see as their biggest challenges?

Celestine: The youths who I work with have accepted my status and they have acknowledged that status does not define a person…that it’s how you live and what you do that define you. But the biggest challenge is that not all of them want to disclose their status or even talk about it; this makes it hard to form a youth support group for those living with HIV.

Researchers at the Boston University School of Public Health have found that multi-person sex (MPS), defined as sexual activity involving several people simultaneously, may be an emerging public health problem among teens.   Results of their exploratory study conducted in the greater Boston area among females ages 14-20 years old showed that 1 in 13 participants had ever engaged in MPS.

Participants ages 14-15 were the most likely to report ever engaging in MPS, and over half (54%) of all study participants who reported ever engaging in MPS had their first experience before they turned 16 years old. More than half of the young women (65%) reported that their involvement in MPS had been pressured, forced, or coerced.  Not surprisingly, alcohol and substance use were related to events of MPS.  According to Dr. Emily Rothman, lead researcher on the study, “one-third of the young women who had a multi-person sex experience had used alcohol or drugs immediately prior, and of those, 50% said the alcohol and drug use itself was not consensual.”

One of the most interesting findings was the relationship between pornography and MPS.  “Exposure to pornography in the past month was associated with a five-fold increase in the odds of having had a multi-person sex experience,” Rothman said. Among participants who reported involvement in MPS, 50% reported that they had been pressured to perform a sexual activity that their partner had seen in porn. “That really raises questions about whether pornography may be influencing the sexual behavior of very young teens and young adults.”

Why is MPS a public health concern for teens?

Participants reported low levels of condom use during acts of MPS, increasing their vulnerability to HIV, other STIs, and unintended pregnancy. “What’s particularly worrisome in terms of public health is that 45% of the most recent multi-person sex experiences, at least one male had not used a condom,” Rothman said.  Forced or coerced sex is also linked to increased risk of STI/HIV transmission. Researchers point out that young women who experience unwanted sex, or sex with multiple partners in a row, may not be physiologically prepared for intercourse, increasing the risk of vaginal tearing and thus the risk of contracting HIV or other STIs. Finally, researchers believe that the risks of STI/HIV transmission associated with multiple concurrent partnerships also likely translate to MPS.

What’s next?

The study conducted by the Boston team was an exploratory study; thus, further research is needed to determine the prevalence of MPS among adolescents in other parts of theUnited Statesand the world. There is a need for larger studies examining the relationship between MPS and HIV/STI risk. Also, more research is needed to determine how engaging in risky sexual behaviors, such as MPS, during the teenage years affects sexual and reproductive health outcomes later in life.

“The take-home message here is that both consensual and non-consensual group sex is happening among youth,” Rothman said. “Parents, pediatricians, health organizations, and rape crisis centers really need to be prepared to talk about, provide education about it, and address it.”

To learn more about this issue, read the full study, “Multi-person Sex among a Sample of Adolescent Female Urban Health Clinic Patients.”

This is the second post in our series, Adolescent Girls, Microbicides, and HIV Prevention Trials. Ms. Anna Kaale, study coordinator; Ms. Doreen Bangapi, community recruitment officer; and Dr. Sylvia Kaaya, local principal investigator,  are with the Muhimbili University of Health and Allied Sciences (MUHAS) and work with FHI 360 on the Adolescents, Women, and Microbicides Trial.

An essential component of the “Adolescents, Women and Microbicides” trial is creating clinical spaces where adolescents feel comfortable.  The Infectious Disease Centre (IDC) in Dar es Salaam,Tanzania, offers dedicated hours for youth-friendly HIV and reproductive health services to young people ages 12 to 24. They provide voluntary HIV counseling and testing, HIV care and treatment services, prevention and treatment of other sexually transmitted infections, and counseling for prevention of unintended pregnancy. We asked two nurse counselors from this site to share their experiences providing these services and working with adolescent and young women (ages 15-21 years) who are participating in the trial.

The nurses noted the following challenges in providing youth-friendly services (YFS):

  • Standalone YFS are often not well known within communities; thus, young people often do not know they exist.
  • Providers face challenges in creating dedicated space and time for YFS.
  • It is difficult to segregate young people and adults in the same clinical care environment.  Young people often report discomfort when meeting adult patients in the clinic.  They worry that their parents, guardians, or other adults they know will discover their use of SRH services.
  • The clinic faces stock-outs, particularly of HIV testing kits. As a result, nurses must either refer young people to another clinic or ask them to wait until supplies become available.  Young people might not have transportation to other health services and also might fail to return once HIV kits are back in stock.
  • Stock-outs of drugs used in treatment of STIs were also not uncommon, and the nurses highlighted the higher impact of such stock-outs on youth compared to adults. Many young people do not have the financial resources to purchase drugs privately and may be unable to request assistance from parents or guardians due to threats to their privacy.
  • Even after being counseled on risk-reduction strategies, young women often face difficulties in attempts to implement them.

Given these challenges, the nurses made the following recommendations:

  •  Increase advocacy about YFS and awareness within the community about the existence and location of YFS.
  •  Place a greater priority for YFS in the provision of clinical and drug supplies, paying special attention to the logistical challenges young people face during stock-outs.
  •  Create private spaces for YFS within facilities.
  • Augment clinic-based health education with interventions to address broader relationship and community-level factors that affect adolescent and young women’s ability to take measures to prevent unplanned pregnancies and STIs, including HIV.
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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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