WHAT IS Infectious Diseases Institute (IDI)?

1. TITLE: BEST PRACTICES OF PEER EDUCATION AROUND THE WORLD; A CASE OF INFECTIOUS DISEASES INSTITUTE (IDI)-UGANDA. • WHAT IS Infectious Diseases Institute (IDI)? • Infectious Diseases Institute is a clinic which was established in 2004 for people living with HIV in Uganda. It’s located in Mulago Hospital, Kampala-Uganda Eastern Africa. • IDI’s focus is to strengthen HIV treatment, care and related infectious diseases, for people living with HIV across Africa. IDI facilitates this through offering high quality training for health workers, research on best practices related to HIV in low recourse settings and advanced clinical services that support the development of new models of care. • In 2008, the infectious diseases institute established a transition clinic for adolescents and young adults aged 16-24 which runs every Wednesday on a weekly basis. This specialized clinic was established to bridge the gap between pediatric and adult care, and seeks to meet the particular needs of young adults as they make the transition from adolescent to full adulthood. It opened with less than 50 young adults. • To date, over 800 young adults are registered. This innovative model of care was instituted to meet the unique challenges of this population group whose needs were formerly unmet in their pediatric unit and the adult clinic.

2. Clinical care includes the following: a. Peer support; • Young adult specific counseling targeting disclosure of HIV status to sexual partners, adherence to ART • Trained peer educators provide health talks to their fellow young adults during their appointments as they wait to see clinicians. • Trained peers rotate on a weekly basis to voluntarily give health talks to fellow peers. • This is done in collaboration with health care workers who are scheduled to respond to medical questions. • Peers encourage each other to live positively with positive attitude and focus. • Sexual reproductive health care; • PMTCT, • Family planning, • Sexually transmitted infection treatment and • Prevention means like condom distribution. 2. HIV clinical care; • Enrolment on ART program, • Treatment of opportunistic infections, • Adherence to Art treatment • Clinical and laboratory monitoring.  3. Psychosocial support; • Peer support

3. PICTURE OF YOUNG ADULTS ATTENDING PEER SUPPORT WORKSHOPS b. Peer support meetings; • The transition clinic holds peer support meetings quarterly on regular basis • The rationale that individuals learn better from their peers. • Peers share experiences on various topics including; -Relationships -Disclosure, -Adherence to treatment -Clinical appointments, -Challenges being faced while growing positively with HIV

4. PICTURE OF DRAMA GROUP AT COMMUNITY OUTREACHES d. Young Adult Drama; • IDI Drama group for young adults Is comprised of 25 members • It has been used as a tool to communicate the message of positive prevention in; • Communities, • Schools, • Churches, • Health centers, • Landing sites • It carries out massive sensitization of HIV prevention, care and treatment through music Dance and drama and sharing testimonies. • The drama team has been able to dramatize most Information, education and Communication impact. E. Young people have been actively involved in developing Information, Education and Communication (IEC) materials which have included topics like disclosure, HIV testing, HIV discordance, sexually transmitted infections, prevention, treatment options and adherence.

5. OUTCOME OF PEER INVOLVEMENT • Many young people are now willing to test for HIV and those already positive have been able to access care and treatment • While the negative ones are encouraged by their peers to remain negative. • Young people still call peer educators for answers to their questions or for advice. • High retention of young adults in care (over 90%). • Involvement in prevention strategies e.g., developing Information Education and communication material (IEC) in partnership with other organizations like HCP, straight Talk foundation, Ministry of health.

6. PICTURES ATTENDING PEER EDUCATION WORKSHOP • In spite the success achieved within the transition clinic at IDI, adolescents and young adults infected with HIV aged 15-24 and 25 -30 years elsewhere still face unique difficulties in the country and globally which includes but not limited to the following, among others;

7. Life skill building; - Young adults in the clinic often lack formal education - They can’t secure their own jobs in their adult life. - This is due to lack of school fees or chronically recurrent illnesses due to lack of care and support from where they stay. - Based on the needs analysis that was carried out amongst the young adults accessing care at IDI, - the skill building initiative for young adults was launched; • Entrepreneurship skills, • Vocational skills • Personal life skills building • Drama skills have been developed through this initiative. • Due to insufficient funds, the program has only benefitted a few people.

8. Key Challenges faced by Young people Transition Systems Examples A young lady at University who is currently bedridden due to self stigma though has all the support that she needs, she dates different guys, has unprotected sex with all of them and none of them knows her status. Another young lady communicates with her dad through a piece of paper whenever she needs anything from her father due to stigma at home by family members and people around her. Young boy aged 15 years who has slept with close to 8 girls around their home and the mother is aware of his sexual behavior But because she fears to disclose to the boy and lied to him that he is on Asthma treatment for life, he is now risking other children with the infection because she also does not want to be identified as living positively due to societal rejection etc. 1. Young people lack systems and proper education to manage the transition from childhood to adulthood. • The ones in place are either not being implemented or lack intensive training in message delivery. 2. Challenges in decision making about healthy relationships, safe sex and abstinence.. 3. Stigma and Disclosure difficulties: • Fear to disclose to parents/caretakers, sexual partners, siblings, or school nurses /matron/patron. • Examples of young people growing with HIV stigma and disclosure; • Two students in Mapeera high school who committed suicide early this year 2012 due to stigma at school.

9. cont 4. Home life; • Young people facing child abuse, neglect, growing up in absolute poverty, etc. • E.g. My personal story; I was rejected by my family when they found out I was HIV positive after the rape in 2004. In 2005, I ran away from home due to extreme stigma, lack of school fees and failure to pay for my medication. Daddy insulted me often. He told me he would rather buy a coffin and keep it home to wait for my death other than throwing money at school for a moving copse. It was hard for me, but I had no options but to hung on. I wanted life and education most. I have been on my own paying for my upkeep and everything through petty jobs. Today, I have travelled to 8 countries, I paid for my diploma and am now at makerere university, Kampala-Uganda. Am doing bachelor of commerce in 3rd year. No one at home knows what am doing and whether am alive. They tell others who ask them about me that am dead. Since 2005, I have never gone back home. I know its wrong but will find my way back at the right time. 5. Lack of proper coping mechanism after testing: • Those that test HIV positive turn to revenging because of anger. They fail to cope and live positively with HIV. 6. Lack of adequate information about HIV, and sex and sexuality leading to; • early marriages, • cross generation sex, • early sex initiation

10. cont 7. Leadership challenges: governments HIV criminalization and control bill; Yet to be tabled in parliament still has potholes that scare many young people from HIV testing, accessing care and treatment in fear of being criminalized there after. Accountability; Many people in the management of HIV have continuously failed o account for what they are meant to do with the funds provided to them and end up not showing the results of their work. This has increased hindrance of access to more funding for better services in many health centers providing ART program. We still have very little funding towards HIV prevention among young people and a lot of funding is being taken into other areas other than HIV prevention in general in the health sector. It’s unfortunate that over 50% goes to HIV treatment and care while only 5% goes to HIV prevention. • Governments are trying their best but we still have very important gaps in systems which would e.g. youth friendly services which provide for the unique needs of young people’s needs and issues and they lack a youth friendly desk where they can access all essential information including youth counselors most especially in rural areas. • Policies; There is only a policy on HIV treatment among children and adolescents and accessed by health care providers. • There are no policies on other issues of young people growing with HIV. • There is limited implementation of the available adolescent programs e.g. Piascy programs are inactive in many schools because teachers are not intensively trained, yet it would have solved a few sexuality related problems.

11. Recommendations: • Leadership systems: Incorporate young people in leadership systems where they can be involved in decision making to get their issues well addressed to avoid collision but influence their decision making capabilities and mentorship. • Accountability is key: We need to know who is responsible for what. We need to put international systems that follow up all the funding that goes to different countries to eliminate mismanagement of scarce resources that are instead being diverted into private investments. Those that are accountable do not do what is intended because they know there is no follow up and serious action once proved guilty. • Financial support: There is need to provide financial support for young people growing with HIV. The majority has dropped out of school due to different reasons. They need support to secure their financial independence e.g. establishing income generating activities that are sustainable, programs aimed at HIV prevention and management, and accountability.

12. cont • Comprehensive Sexuality education promotion at all learning institutions: This helps young people to realize their body changes and know what to do when such changes occur to avoid early pregnancies, sexually transmitted diseases, early marriages. • Promote disclosure: Through life skill and capacity building trainings for young people growing with HIV, parents, and responsible staffs in schools e.g. Matron, school counselors or nurses. • There should be support systems that help the positive young people to meet, share experiences, learn from each other and encourage one another towards positive living and ART adherence and its importance within their health care systems. • Train and or promote already trained peer/youth counselors: These will help in HIV prevention, care and treatment and will improve adherence once young people get the right information that they need. • Scale up HIV new models of message delivery to specific target groups in management of HIV using the right tools and well packaged information. • Governments and stake holders: Donors and governments are encouraged to support the skill and entrepreneurial development initiatives of the adolescents. • Further support is needed: Also increase the number of peer involvement in all health care centers in the country.

13. CONCLUSION: 1. The transition clinic is a new model of care that has dramatically changed the lives of several young adults at infectious diseases institute. 2. I am the living example of this program. My adherence is, “if I may say,” excellent from less than 200-CD4 count in 2004 to CD4-1077 today with undetectable viral load count. I am a leader today. I never knew I was a leader. IDI through its capacity building trainings shaped me to realize my potential and know who I am. 3.With support from Accordia global Health Foundation-Washington, capacity building has been successful in infectious diseases institute.. IF IDI CAN DO IT, OTHER CLINICS AROUND THE COUNTRY CAN DO IT, AFRICA CAN DO IT AND THE WHOLE WORLD CAN DO IT. SO……, LET’S DO IT! MAY GOD BLESS YOU!

14. Prepared by:KemigishaJacklineMakerere University/Infectious Diseases Institute-MulagoKampala-UgandaEmail: Jkemigisha27@gmail.comMob: +256774402280

15. Thank YOU!