The roll-out of anti-retroviral treatment (ART) programs in many sub-Saharan African countries has made it possible for large numbers of perinatally HIV-infected infants to reach adolescence. However, in many of these countries, HIV/AIDS treatment, care and support programs are organized around adult and pediatric care, neglecting the specialized needs of adolescents. Providing proper care for HIV-positive adolescents requires strong social support—by families, peers and adult role models—to encourage medication adherence, disclosure, proper nutrition and other healthy behaviors. Though the challenge of addressing the needs of a rapidly growing HIV-positive adolescent population is daunting, BIPAI has risen to the challenge and has already spearheaded a number of medical and psychosocial interventions for its adolescent patients, including a network of peer support groups called “Teen Club” at its COEs in Botswana, Lesotho, Malawi, Uganda, Swaziland and Tanzania. BIPAI has also been proactive in designing camp interventions, HIV prevention campaigns, life skills curricula, leadership training and transition of care services for adolescents and young adults living with HIV.
With over 3,500 active members in 6 countries, Teen Club International is the world’s largest network of support groups for adolescents living with HIV!
In August 2003, the first BIPAI-sponsored Teen Club for HIV-positive adolescents began at our COE in Uganda in partnership with Mulago Hospital. Since then, Teen Club has spread to many of our other country locations and has been used as a model for the provision of peer support to HIV-positive adolescents worldwide. The BIPAI Teen Club programs in Africa have been cited as a best practice for providing the extra social support HIV-infected adolescents need in “Children and AIDS: Fifth Stocktaking Report 2010,” a report released in December of 2010 by UNICEF. Teen Club has also been cited as a promising practice by the U.S. Agency for International Development (USAID) AIDStar-One program.
The mission of Teen Club is to empower HIV-positive adolescents to build positive relationships, improve their self-esteem and acquire life skills through peer mentorship, adult role-modeling and structured activities, ultimately leading to improved clinical and mental health outcomes as well as a healthy transition into adulthood. Teen Club events usually occur on Saturdays and include large group games, drama/theatre activities, pool parties, safaris, sports and art sessions. Educational components—including topics on HIV education, disclosure, adherence, life skills, college preparation, personal finance management and goal-setting—are also incorporated into the Teen Club events.
“There was a time I thought I’d never say this, but being HIV-positive has had its blessings. No one knows how their life is going to end up or what will define the short time they have here on Earth, but for me it has been being HIV-positive. Maybe I wouldn’t have developed my optimistic perspective on life if I had been HIV-negative and had never gone to Baylor Clinic or Teen Club; maybe I would have ended up a thief or a drunkard. Now I live a cautious life, one in which I look after myself well, eat well, take my meds every day on time, a life in which I have accepted who I am.”
“I’m positive and proud to be me. I know I’m making my parents proud; the life I’m living is the one they would have wanted if they were still alive and I know that even though they are not here with me, they are proud, they love me, and they are looking after me. It’s God’s will how things turn out to be, so let’s accept that and then our lives will be how we want them to be.”
—Thato Chris Ramotswe, Jr.
Decentralization to Satellite Sites
Expansion of satellite Teen Clubs to various outreach sites has allowed adolescents who are not currently enrolled in the primary COE in a particular country to benefit from the Teen Club model. For some countries, these satellite Teen Clubs operate at satellite COEs. In other circumstances, our COEs partner with non-governmental organizations (NGOs) and ARV hospitals in various towns and villages to implement satellite Teen Clubs. As detailed in a memorandum of understanding between the involved parties, each partner agrees to support Teen Club activities in the following manner:
- Center of Excellence: Provides funding for teen transport and meals, training for adult volunteers and administrative oversight.
- NGO Partner: Serves as primary implementing body of satellite Teen Club; coordinates and screens adult volunteers; submits attendance records and event summaries.
- ARV Hospital: Provides referrals for HIV-positive adolescents to attend satellite Teen Club events as well as medical follow-up and counseling for Teen Club members.
Partnering with NGOs and health care partners at the local level has allowed our COEs to decentralize their psychosocial care and support interventions for adolescents—particularly Teen Club—to various towns and villages throughout their countries of operation.
In addition to strong support from COE staff and adult volunteers, our Teen Clubs rely on the leadership of elected teens, called teen leaders. In order for the teen leaders to best fulfill their duties and responsibilities, we provide them with training in peer mentoring and leadership skills. Such training gives the teen leaders confidence to perform their duties and reinforces their status as role models for other adolescents. A comprehensive training program has been developed by our Botswana-Baylor COE to provide adolescent teen leaders with knowledge and skills in the areas of peer education, leadership, prevention with HIV-positive teens, public speaking and effective Teen Club event planning and implementation.
In order to increase teamwork and leadership skills amongst the teen leaders, teambuilding retreats have been held during the school holidays. These retreats are in the form of camps with a variety of outdoor teambuilding activities. The retreats also reinforce various life skills and peer mentoring techniques as well as provide an opportunity for the teen leaders and adult volunteers from different sites to share their challenges and best practices with each other.
Life Skills Curricula Development
We have designed and are constantly updating customized life skills curricula that are used to empower our adolescents to make healthy decisions as they transition into adulthood. Furthermore, we have created a toolkit for the provision of support services for HIV-positive adolescents that helps other individuals and organizations to replicate our Teen Club model and support services. Finally, we have adapted a question-and-answer guide called “Teen Talk” for HIV-positive adolescents. The guide includes modules on reproductive health, emotions, relationships, stigma, disclosure, ARV adherence and other issues specific to HIV-positive teens and is currently published in both English and Setswana. Though adaptations and translations for additional countries are planned for the near future.
Camp Hope has been part of the BIPAI network since 2005 and has continued to grow each year. The camp provides new opportunities for friendships to form among the patients, and those who have attended camp are often noticeably empowered by the experience. The children chosen for Camp Hope are often selected with strong preference for those in challenging psychosocial situations who have significant problems with their medication adherence.
The inclusion of teen leaders from Teen Club as counselors and members of the leadership committee has become a hallmark of Camp Hope at many of our sites. They serve as role models and mentors to whom the campers can relate, particularly through their reinforcement of the importance of maintaining good adherence. In addition, our volunteer team is often a mix of COE employees, volunteers and qualified staff from community-based organizations. These volunteers work tirelessly to lead a variety of exciting activities such as cooking and nutrition, character development, arts and crafts, dancing, sports and talent shows. In addition, sessions on feelings and emotions are led by the COE’s psychosocial team, which includes psychologists and/or social workers, who help the children discuss and process their feelings in a safe and comforting environment.
As a result of Teen Club, participants report being better at handling their daily life, getting along with their family and peers, performing academically, coping with the challenges of life, accepting their HIV status, adhering to their medications and practicing life skills, and they report having more hope for their future. Participants have called for increased support to reduce risk-taking behaviors such as unprotected sex and alcohol and drug abuse. Participants have also expressed a need for information and guidance on healthy disclosure as very few participants have admitted to disclosing their serostatus to a friend or romantic partner. Anecdotal evidence strongly suggests that Teen Club plays an important role in normalizing the lives of the teens enrolled.