Supporting People Living with HIV/AIDS to Lead the Response to HIV Living Again Supporting People Living with HIV/AIDS to Lead the Response to HIV Savy Bou Strategic Behavioral Communications Officer Family Health International in Cambodia XVI International AIDS Conference (Toronto, Canada, 13th-18th August)

Cambodia: An HIV/AIDS Success Story Declining HIV Prevalence. HIV/AIDS prevalence in Cambodia has dramatically decreased, from 3.0 % in 1997 to 1.9% in 2003. An estimated 129,00 people are living with HIV. Increasing access to ART. Cambodia is the only country in the Western Pacific Region to have achieved WHO’s 3 x 5 target of PLHA on ART 2003-2005. Cambodia has almost met the ART Universal Access targets for 2010. Decreasing stigma. As more and more PLHA have access to care, support and treatment services, and more Cambodians learn about the virus, stigma is decreasing. PLHA have hope that despite HIV, life has beauty, meaning and purpose.

Meaningful Participation: PLHA Play Key Roles in the ‘Continuum of Care’ People living with HIV/AIDS play a vital and valuable role in supporting other people living with HIV/AIDS. They work in hospital clinics, counseling centers and home-based care teams. They organize and facilitate support groups. The role of PLHA is essential within the Continuum of Care. Health staff are often overwhelmed by their heavy workload and have little time for patient education and support. However, there is a need to strengthen the knowledge and facilitation skills of PLHA support group leaders, and to work with them to develop appropriate interactive educational materials.

Developing “Living Again” Living Again is an educational video tool developed by and for PLHA. 27 men and women and 10 children—all people living with HIV—developed the script and organized all aspects of developing the interactive educational video. Living Again consists of 9 scenarios related to living with HIV, followed by discussion questions. All the people featured in the video are rural people living with HIV. None have acting experience. PLHA, together with technical support from FHI, PATH, CPN+ and NCHADS, developed a facilitator’s handbook. Support group leaders were trained in facilitating interactive sessions using the video tool.

Living Again: Objectives and Topics Nutrition and community support Opportunistic infection prevention and family support Safer sex, family spacing and PMTCT TB treatment and TB preventive therapy Discordant couples Adherence to ART Coping with the side effects of ART Skills to promote adherence to ART Care and storage of ARVs Living Again Objectives: To promote adherence to HIV care, support and treatment To stimulate discussion and sharing of experiences between PLHA and their families during support group meetings To strengthen the facilitation skills of PLHA support group leaders

“I volunteered to participate in the video because I wanted to show that people living with HIV are productive members of their community. I also wanted to encourage other people to be open about their HIV+ status, and to be hopeful, confident and brave.” (Ou Him, Housewife and PLHA Support Group Leader)

Strengthening the Facilitation Skills of PLHA Support Group Leaders 18 PLHA have become core trainers 70 support group leaders have been trained to facilitate the Living Again materials Almost 1000 PLHA have participated in Living Again support group meetings in Battambang province Living Again is now being used in other Cambodian provinces

“Living Again” – A Catalyst for Change Support group leaders use Living Again as an advocacy tool. It portrays the positive lives of PLHA who are making valuable contributions to their community, and supporting other people living with HIV. Facilitators report increased knowledge, skills and confidence to facilitate discussion sessions with their peers. Support group participants learn from each others’ experience and support one another to stay healthy. The video tool successfully promotes group participation and interactive discussion.

Increasing Confidence and Participation “After 3 days of training I felt more confident to facilitate discussions with my peers. My peer group asks many questions during our discussions.” (Long Mony, PLHA Support Group Leader)

Reducing Stigma and Increasing Hope “ When I see that the actors in the video are healthy, have jobs and have volunteered to reveal their HIV+ status in public, it encourages me to adhere to care and treatment. I hope I will be healthy and be able to work like them.” (PLHA, Battambang province) “ When I attend the support group meetings and see other PLHA in the video, I think to myself ‘why should I feel embarrassed.’ Since then, I feel confident to participate in discussion groups.”

Lessons Learned PLHA reported that participation in the development of the video was very motivational. By working collaboratively they successfully developed a discussion tool that is relevant and meaningful to their daily lives. The participatory process provided an interesting and stimulating way for the participants to build their knowledge and skills. By actively involving affected communities during the video development process, the activity served to promote the positive contributions people living with HIV/AIDS make within their respective communities. Group facilitators’ skills need strengthening. Follow-up support and on-the-job skills building activities must be built into the development of any communications materials.

Next Steps Ensuring that more PLHA access the Learning Again tool by increasing the coverage and supporting partners and other stakeholders in the country to use it. Providing audio cassettes to remote areas where video is unavailable, or electricity unreliable. Working with PLHA to develop new scenarios, based on their needs. Adapting Living Again for children (cartoon format) and other vulnerable groups, such as illicit drug users.

Thank You For Your Attention