Using the Make A Positive Start Game. and Jessica/Mike Audio with HIV Positive Adolescents in the Community: End-of-Project Report

Transcription

1 Using the Make A Positive Start Game and Jessica/Mike Audio with HIV Positive Adolescents in the Community: End-of-Project Report SUBMITTED: APRIL 2010 Treat for Life Campaign: Giving Hope to Young People Living HIV and AIDS

2 Table of Contents Acknowledgements... i Acronyms... ii EXECUTIVE SUMMARY... iii 1.0 INTRODUCTION Background Goals, objectives, implementation strategy and partners PROJECT PERFORMANCE Orientation of Peer Change Agents Using the Make A Positive Start Game and Jessica/Mike Audio Mobilization of Adolescents Facilitation of Sessions The Community Sessions...6 Treat for Life End-of-Project Report

3 Acknowledgements UNYPA would like to thank HCP for the opportunity to take on this landmark project and, over three challenging, important months, to be able learn, play and share experiences on using the Make A Positive Start Game and Jessica/Mike Audio with adolescents living with HIV and AIDS in 7 districts of Kampala, Gulu, Jinja, Kabarole, Mbale, Mbarara and Mubende. UNYPA gives special thanks to Ruth Musekura, the Deputy Chief of Party, Laura and Joseph of HCP who provided critical guidance and support. Amon and the team from YEAH who conducted support supervision and offered valuable feedback during the project. UNYPA was fortunate to leverage on its membership with the National Forum of PHA Networks in Uganda (NAFOPHANU) to support the Sessions in the Community to the respective District PHA Forums, and greatly appreciates the contributions of NAFOPHANU and District PHA Forums of Kampala, Gulu, Jinja, Kabarole, Mbale, Mbarara and Mubende. The Treat for Life campaign had a team of 5 UNYPA staff during its lifetime, and the success of the project is a result of their leadership and dedication to the needs of young people living with HIV/AIDS. The UNYPA team composed Paddy Masembe executive director, Moses Engadu programme and finance manager, Raymond Kwesiga programmes officer, Lillian Magambo programme assistant and Joel Kawule programme assistant. We would also like to make special mention of Princess Nuriat Kisitu, David Kizito, Ritah Alimpa and Gordon Turibamwe members of UNYPA who participated in the development of the FAQ Booklet and appeared on the Posters for the Treat for Life Campaign. As always, UNYPA greatly appreciates the work of its partner organizations and the communities they serve. These organizations and community members displayed amazing innovation and persistence in the face of many challenges. Their selfless commitment to strengthening care and support of young people living with HIV and AIDS is an inspiration. This report was prepared by Moses Engadu and Raymond Kwesiga of UNYPA using reports and documents since the project s inception. Treat for Life End-of-Project Report Page i

4 Acronyms AIDS ART CHAIN FP HCP HIV IEC IDI JCRC M&E NAFOPHANU PHA RCEs UNYPA USAID YEAH YPLWHA Acquired Immuno-Deficiency Syndrome Anti-retroviral Therapy Community HIV and AIDS Initiative Family Planning Health Communications Partnership Human Immuno-Deficiency Virus Information, Education and Communication Infectious Diseases Institute Joint Clinical Research Centre Monitoring and Evaluation National Forum of PHA Networks in Uganda People Living with HIV/AIDS Regional Centres of Excellence Uganda Network of Young People Living with HIV/AIDS United States Agency for International Development Young Empowered and Healthy Young People Living with HIV and AIDS Treat for Life End-of-Project Report Page ii

5 EXECUTIVE SUMMARY UNYPA is pleased to provide an End of Project Report covering the period July 2009 to September 2009 on its Using the Make a Positive Start Game and Jessica/Mike Audio Story with Adolescents in the Community funded by USAID through Health Communication Partnership (HCP). This Treat for Life End-of-Project Report provides an overview of the project, details its achievements and impact, highlights lessons learned, and presents insights into the current challenges adolescents living with HIV and AIDS, as well as their current and future needs. The mandate for UNYPA is to provide leadership and a voice for young positives to create an enabling environment to participate meaningfully. Through its Young Ambassadors for Positive Living UNYPA assists young positives to cope and mitigate the impact of HIV and AIDS. Currently, UNYPA has a membership of over 50,000 young people living with HIV and AIDS across the country. During the project, UNYPA worked with twenty (20) peer change agents from 7 districts who were trained to facilitate sessions in their localities. The sessions in the community were conducted in the seven (7) districts of Kampala, Gulu, Jinja, Kabarole, Mbale, Mbarara and Mubende. A total of 66 sessions were to be held in July, August and September ,802 adolescents living with HIV and AIDS attended the Make A Positive Start game and Jessica/Mike audio sessions in the community and gained critical information and skills on positive prevention, disclosure, adherence and family planning. The purpose of the sessions was to empower and reinforce the knowledge of HIV Positive Adolescents and lead to behaviour change through Positive Prevention, Disclosure and Adherence to treatment. The focus was on how one can disclose his/her status to a partner, relatives and friends and also to equip the HIV positive adolescents with life skills that can help influence behaviour change. The expected outputs in this project comprised of the following: 1. Mobilize a team to be oriented as peer change agents; 2. Provide schedules, mobilize adolescents and facilitate sessions using the game and audio within the communities in 7 RCEs in July, August and September 2009; and 3. Work with HCP to capture information regarding participation in the sessions using the YEAH data tools; and feedback from adolescents before and after sessions. The key achievements included holding of all the 66 planned sessions in 7 RCEs as well as reaching 1,802 adolescents with information and skills on treat for life. The key challenges included; mobilization as some parents, guardians and caretakers of the young positives required a lot of convincing to release their sons and daughters to attend the sessions. Another key challenge was lack of adequate funding to finance all components of the project since HCP was releasing 50% of the total sum with UNYPA expected to raise the 50% balance complete the session and receive the balance which resulted in delays in accomplishing some planned activities. The key recommendations include provision of adequate learning materials and participant incentives (giveaways) and scaling-up sessions to enable more HIV positive adolescents to break the code of silence as the sessions give interactive time for sharing their everyday experiences, their challenges and how they overcome hence mitigating the impact of stigma and discrimination which is still very high in most communities up-country. Treat for Life End-of-Project Report Page iii

6 1.0 INTRODUCTION This Treat for Life End-of-Project Report provides an overview of the Treat for Life project from its inception, details its achievements and impact, highlights lessons learned, and presents insights into the current challenges HIV positive adolescents face, as well as their current and future needs. 1.1 Background Uganda Network of Young People Living with HIV/AIDS (UNYPA) was established in 2003 and works with health care providers, schools and community based organizations to assist young positives to cope, enhance adherence to ARV therapy and give young positives a voice at the local, community and national level. Presently, UNYPA has a membership of over 50,000 young people living with HIV/AIDS across the country. UNYPA exists to improve the quality of life of YPLWHA through the creation of a supportive environment for people living infected and/or affected by HIV/AIDS to meet their material, health and emotional needs. Health Communication Partnership and Joint Clinical Research Centre produced the Make A Positive Start and the Jessica/Mike Audio/discussion guide for use in adolescent clubs for HIV positive adolescents. Health Communication Partnership wanted to ensure that these IEC materials are effectively utilized as educative and entertaining tools during community sessions for Adolescents. The sessions were to be held in the months of July, August and September 2009 with the impact of using these games on the adolescents being monitored. The sessions with HIV positive adolescents were to be held in the areas surrounding the JCRC 7RCEs namely Kampala, Gulu, Jinja, Kabarole (Fort Portal), Mbale, Mbarara and Mubende. The sessions within the community were to be supplemented by the health centre sessions coordinated by the JCRC Adherence team with the community sessions intended to reach out to HIV positive adolescents who are not on HIV treatment and therefore most likely do not attend club sessions at health centres. Treat for Life End-of-Project Report Page 1

7 In July 2009, UNYPA signed a Cooperative Agreement with HCP for implementation of Treat for Life campaign. Under this agreement, HCP agreed to provide UGX million or $26,184 in funding to implement a 3 month pilot project ending in September The pilot project was aimed at conducting sessions with HIV positive adolescents in the community using the Make A Positive Start Game and Jessica/Mike Audio and discussion guide. The purpose of the sessions was to empower and reinforce the knowledge of HIV Positive Adolescents and lead to behaviour change through Positive Prevention, Disclosure and Adherence to treatment. During the period of agreement, UNYPA was also to provide support in the development and testing of the Treat for Life Campaign messages, posters and the FAQ booklet. 1.2 Goals, objectives, implementation strategy and partners The goal of Treat for Life (July September 2009) was to reach HIV positive adolescents with information and skills to empower and reinforce their knowledge and lead to behaviour change through Positive Prevention, Disclosure and Adherence to treatment. The objectives of the Treat for Life were: 1. To effectively utilize IEC materials as educative and entertaining tools during community sessions for HIV positive adolescents. 2. Monitor the impact of the use of the Make A Positive Start game on HIV positive adolescents. The primary beneficiaries of the project were HIV positive adolescents in the 7RCEs both in-school and out of school targeting those who do not attend adolescent club sessions at health centres. The implementation strategy was to train and support 5 peer change agents from each of the 7RCEs to facilitate community sessions in 7 districts to ensure appropriate, effective, and sustainable community-based interventions for HIV positive adolescents. Treat for Life End-of-Project Report Page 2

8 The expected outputs in this project comprised of the following: 1. Mobilize a team to be oriented as peer change agents; 2. Provide schedules, mobilize adolescents and facilitate sessions using the game and audio within the communities in 7 RCEs in July, August and September 2009; and 3. Work with HCP to capture information regarding participation in the sessions using the YEAH data tools; and feedback from adolescents before and after sessions. The deliverables of the project were: 1. Interactive sessions in July (22), August (22) and September (22); 2. Three reports for the months of July, August and September 2009; 3. A schedule of detailed timings and dates for game and audio sessions; 4. Filled in data collection forms which include the YEAH/HCP attendance forms; YEAH report form. Monitoring and support supervision of sessions was done by HCP and YEAH to ensure that the sessions were successfully conducted. Treat for Life End-of-Project Report Page 3

9 2.0 PROJECT PERFORMANCE 2.1 Orientation of Peer Change Agents In line with the implementation strategy, to train and support peer change agents from each of the 7RCEs to facilitate community sessions in 7 districts to ensure appropriate, effective, and sustainable community-based interventions for HIV positive adolescent, UNYPA mobilized peer change agents who attended both the first orientation session on June 22 nd and 23 rd and second orientation session on June 29 th and 30 th 2009 at Kati Kati. The first orientation session had 20 peer change agents from Kampala (10), Mubende (5), Jinja (5) and 5 coordinators (UNYPA staff) while the second session had 20 peer change agents from Gulu (5), Kabarole (5), Mbale (5), Mbarara (5). These peer change agents became the fulcrum and focal contact of the Treat for Life in the community for ownership and making it easier to integrate the Treat for Life Campaign in the ongoing Young Ambassadors for Positive Living programme of UNYPA hence achieving sustainability. There was also ongoing peer change agent orientation especially with the introduction of the component of Family Planning for HIV Positive Adolescents. Peer Change Agents of Kampala district being oriented on integrating Family Planning and Skills Building into the UNYPA Treat for Life Community Sessions Treat for Life End-of-Project Report Page 4

10 2.2. Using the Make A Positive Start Game and Jessica/Mike Audio UNYPA successfully conducted 66 HIV Positive Adolescent sessions using the Make A Positive Start Game and Jessica/Mike Audio in the 7 districts of Kampala, Gulu, Jinja, Kabarole, Mbale, Mbarara and Mubende Mobilization of Adolescents Mobilization in the districts was carried out by the Peer Change Agents. The HIV positive adolescents who were targeted were those that had not attended the sessions in previous month. We recorded no incidence of participants who had attended the JCRC conducted sessions because most of our sessions were held in the sub-county health centres (rural settings) in the districts while those of JCRC were held at the Regional Centres of Excellence which are located in towns. The month of August being holiday time, we also reached a niche of HIV positive adolescents who are in boarding school and normally don t access Behaviour Change Information in the Health Centre setting. Some of the HIV Positive Adolescents mobilized and in session in Mbarara Facilitation of Sessions The facilitators of the sessions were the peer change agents who were trained/ oriented to familiarize them with the game and facilitators manual and the audio. During each session, there were at least 4 facilitators with a ratio of 1:8 (1 facilitator to 8 participants). The sessions were also attended by UNYPA who provided support supervision A peer change agent supporting adolescents to play the Make A Positive Start Game during 1 of the sessions Treat for Life End-of-Project Report Page 5

11 2.2.3 The Community Sessions The Community sessions started at 10:00am and lasted up to 5:00pm. The sessions were divided into three sub-sessions/activities which comprised of the Make A Positive Start Game; the Jessica/Mike Audio; and Family Planning/Skills Building The Make A Positive Start Game The Make A Positive Start Game was played for between up to 3 hours depending on the district. Participants were put in groups of 6 8 with each group given a board game. The first task for the groups was to select their leader which was duly done. The groups presented two methods for selecting the order of the players for the game. The participants each wrote a number (i.e. 1 to 8) on a small piece of paper, wrapped them. Each member picked and the number picked determined the turn in playing. The groups were then spread to various corners of the hall and each group was assigned a facilitator to support them to understand the dynamics of the game and also direct them on how to use the guide. Before the game started, the facilitators took participants through the rules on how to play the game. It was also agreed that while playing the game, participants could use the language which they are comfortable with (that is English or Local language) to explain to others the information on the board. The participants were also informed that there will be some giveaways/prizes for those who finished first and those who actively participated. This was done to motivate and get all participants to be involved. The Game was played by all the participants and as required different players answered different questions. The participants engaged in group discussions around the issues raised by the game and the facilitators helped the participants to understand how to play the game and use the guide book as well as answer some questions. Those who finished playing the game earlier than others were recorded and asked to reflect on the game while other players also finished. Treat for Life End-of-Project Report Page 6

12 Feedback about the Make A Positive Start Game: After all teams and players had finished, the participants were reconvened to share in a plenary session the feedback about the game including what they learnt, what they didn t understand and how the game can be improved. The responses were that the game was: Fun Educative Informative Interesting Easy to play Only in English Most participants acknowledged that they had acquired new knowledge from playing the game especially it helped them on the issue of how disclosure because many had not yet disclosed The Jessica/Mike Audio The organizers made sure that there were equipment for listening to the audio. Before the audio the participants were engaged in a discussion about whether they had heard about the Jessica s audio before on Rock Point 256. Most participants in the rural setting had not had about the audio and we excited because it was their first time. The participants were informed that they needed to listen attentively, write down the issues they have not understood well and that after each story clip they will be required to discuss and role play some of the scenes. The participants listened to the Jessica and Mike Audio story clips and thereafter they contributed well towards the answering questions from the audio. They enjoyed role playing and acting the scenes especially those in the camps in Gulu district. Feedback about the Jessica and Mike Audio: The feedback captured after listening and discussing the Jessica and Mike Audio was: - Most participants appreciated the usefulness of the information in the audio; - Many participants agreed that disclosure is very important to your partner and that if they were in Mike s place, they too would have chucked Jessica; - Many participants shared why people do not disclosure and the thing that came out clearly was fear of stigma and discrimination. - Just like in Story 8, all participants agreed that there is a big benefit if you disclose to your partners and the people you trust because they will help you to adhere to treatment. - Some participants especially the ones in proposed the Jessica/Mike Story be acted as a film so they can watch the video. Treat for Life End-of-Project Report Page 7

13 Family Planning/Skills Building During the some sessions, Family Planning and a skills building component for HIV positive adolescents was introduced. On family planning, the participants were trained on what FP is, the methods and benefits of family planning for young people living with HIV while on skills building, each adolescent participated in a condom demonstration exercise. Achievements UNYPA recorded the following achievements: All 66 community sessions were held in the 7 RCEs 1,802 HIV positive adolescents were reached/trained on positive prevention, disclosure, adherence and family planning and played the Make A Positive Start game and listened to the Jessica and Mike Audio. The HIV positive adolescents contributed well towards the discussions during the sessions and in answering questions from the Jessica and Mike audio. The HIV positive adolescents appreciated the Treat for Life Campaign and agreed that Positive Prevention is important to avoid transmission and re-infection; disclosure is important for support; and adherence to treatment is the only way to live a happy and long life. The HIV positive adolescents appreciated the usefulness of the information in both the game and the audio. The sessions gave interactive time for the young people (HIV positive adolescents) to share their everyday experiences, their challenges and how they overcome them hence motivate and encourage each other. The peer change agents were able to mobilize the young positives well in time, ensure their timely arrival and prepared them well for the sessions. Challenges The key challenges included; mobilization as some parents, guardians and caretakers of the young positives required a lot of convincing to release their sons and daughters to attend the sessions. Another key challenge was lack of adequate funding to finance all components of the project since HCP was releasing 50% of the total sum with UNYPA expected to raise the 50% balance complete the session and receive the balance which resulted in delays in accomplishing some planned activities. Most materials including the Make A Positive Start Board Game are in English which gave some participants a problem in comprehending. Some participants said that the audio clips were too long. Partners UNYPA worked with the following partners towards the execution of the sessions in the community: Kampala (JCRC, YEAH, Baylor College of Medicine, IDI, CHAIN, Nsambya Home Care, Kawempe Health Centre); Mubende (District PHA Forum); Kabarole (District PHA Forum); Gulu (Health Alert and District PHA Forum); Jinja (TASO and District PHA Forum); and Mbale (District PHA Forum). Treat for Life End-of-Project Report Page 8

14 Recommendations The following are the recommendations from both the participants and UNYPA: That, there is a need for the translated version of the Make a Positive Start Game and adequate learning materials should be provided; That there is a need of scaling-up sessions to enable more HIV positive adolescents to break the code of silence as the sessions give interactive time for sharing their everyday experiences, their challenges and how they overcome hence mitigating the impact of stigma and discrimination which is still very high in most communities up-country; Support establishment of HIV adolescent peer support clubs in health centres in rural areas for sustainable access to community HIV programs for young positives; That the Jessica and Mike Audio should be made into a video film as most young people prefer to watch (see) than to listen; Improve facilitation in order to effectively implement the various sessions in different locations; Provision of session incentives to all participants such as the adherence clocks and t-shirts; Documentation through pictures and videos especially for testimonies is very important; and During the scale-up to reduce the financial strain and to enable UNYPA easily carry out all the required sessions in the community, we that all the budgeted funds should be released to UNYPA as opposed to the 50% since UNYPA is a non-profit entity which depends on grants and support from donors and well-wishers Testimony: One time, I asked my teacher to go and get my drugs, he told me that if I go then my drugs will teach me, so I didn t go to take my medicine but now I have learnt and know my rights as a young positive. 15 year old Girl, Gulu District Support Supervision and Evaluation Support Supervision was carried out by the YEAH team in some districts. After each session, the participants were given the HCP evaluation forms for the Make a Positive Start Game and Jessica/Mike Audio which they duly filled in groups and were submitted to HCP together with the HCP registration forms. Sustainability In order to ensure sustainability, UNYPA is working to integrate the playing of the Make A Positive Start Game and listening to the Jessica and Mike Audio into the ongoing young positive activities and dialogues in the districts and community. This will ensure that we tap into HIV positive adolescents who have played the game and/or reinforce the message for those who may have already played the game. Treat for Life End-of-Project Report Page 9