Communities need to play a more significant role in the design and implementation of HIV prevention, treatment, care and research programs in order to enhance HIV and AIDS responses.
More often than not, communities are only involved in AIDS programs as target groups which reduces the impact of interventions. As a result, millions of dollars invested into AIDS every year go to waste and nothing changes at community level.
During a monthly NGO Forum held in Chiang Mai, Thailand, titled "Community Based HIV and AIDS Responses: Care and Treatment and Research," NGO participants agreed that an HIV and AIDS response which is not grounded in the community remains abstract and fails to address the real needs of people infected or affected by the epidemic.
Three Approaches to Community Involvement
"The community is key to our work, we aim to make the community aware and involved in HIV and AIDS efforts," said Nipha Chompoopah of the RaksThai Foundation.
She added that a good response to the AIDS epidemic relied on community participation at all levels, and that in Thailand there was a traceable evolution of the community's involvement in HIV and AIDS research programs.
"Our work began with encouraging people living with HIV to open up about their status, and when that happened sexual behaviours came into question," said Chompoopah. "With sexual behaviors, we needed to face up to gender-related issues, sexual diversity and sexual reproductive health as well as looking at sexuality from the social perspective."
As a direct result of community based research, her organization began implementing home based care interventions to get the community to be involved in the care of people living with HIV.
"Lessons learned inform our project that prevention work cannot be carried out separately from work on sexual behavior. We learned that to work effectively on prevention, issues such as sexuality, safe sex, unwanted pregnancy, reproductive health, sexual health, sexual diversity, gender, promotion of equality and social dimension of sex cannot be avoided," she said.
According to Chompoopah, the research conducted by the RaksThai Foundation is not merely confined to clinical study and relies on participation from community to bring about solutions. Chompoopah said ongoing research that her organization is conducting is focused on the role of alcohol, HIV and domestic violence.
The hypothesis is that excessive alcohol consumption influences the spread of HIV and many women are treated with violence as a result of unequal status between men and women and the patriarchal structure in society.
Prasert Dechaboon, coordinator of the Protestant Network, which is part of the Religious Network for HIV/AIDS in Thailand, said that since its inception in 2004, one of the most important strategies of his organization is to apply religious teachings to HIV and AIDS responses.
"Based of the attitudes of conservatives, religious teaching perpetuates a dichotomy of good and bad, right and wrong, even though, essentially, all religions hold it most important to develop inner strength," said Dechaboon.
Dechaboon said that sustainable care in the community is made possible by raising awareness to make local people feel that HIV and AIDS is a common problem that can be resolved with greater inner power.
The primary objective of the work by religions organizations is to mobilize the community to help in the care of PLHAs and affected people as well as to enable PLHAs and their families and community members to have access to health services. In addition, support has been provided for orphans and vulnerable children and their families.
Spiritual approaches underpin the work and religious teachings are applied to promote the "volunteer spirit" among local villagers, said Dechaboon.
According to Dechaboon, lessons from working with the community inform the work of religious organizations, particularly regarding communication which eventually leads to action planning at the local level - highly essential within the community.
"The focus should be on promoting self-esteem, self-care, strengthening and empowerment of organizations, promoting participation, and a sense of ownership among local people. All of these will contribute to a supportive environment for promoting care in community by relying on resources from temples, mosques and churches," he added.
Suwalai Chalermphanmethakul of the Program for HIV Prevention and Treatment (PHPT) said that her work focuses on designing and implementing research on the treatment.
She said that one of PHPT's major achievements was the use of ARV drug (AZT) to reduce mother to child infection.
"In a full scale clinical research, a lot of people have to be recruited as participants, thus communication with community is very necessary," she said. "Participants are informed of the pros and cons of getting involved. Getting participants to know the real issues and coming to terms with them is essential for carrying out the work."
The research implementation largely relies on help from the "Community Advisory Board (CAB)" which makes possible the most effective follow up on the ARV treatment. The community must be informed during the process to recruit participants including information about HIV/AIDS research projects.
The CAB is composed of representatives from the PLHAs, affected people, NGOs, local state agencies and Buddhist monks. The CAB plays an important role to promote the clinical research within the community.
"Local people are given information about the project and are encouraged to have more understanding about HIV/AIDS and to have better access to prevention and care," said Suwalai.
A major achievement of PHPT is the provision of HIV testing and ARV treatment for children as young as 2-4 months. As a result of early detection of HIV, children can have access to early treatment.
Apart from carrying out research, PHPT also provides training to educate PLHAs on reproductive health, prevention of viral exchange, drug adherence, training for caretakers on ARV treatment and educating youth as well as disseminating information about research results of the research through radio.
Effective AIDS programs need the community to be engaged. In the absence of effective community participation, there will be limited real impact of HIV and AIDS programs.
