In our latest blog, Dr Limin Mao explains the importance of social research to people affected by HIV.
It is true that nowadays, once diagnosed with HIV, people can live as long as others without HIV. But stigma and discrimination are still prevalent. It is true that taking antiretroviral treatment as soon as possible can both alleviate the bodily damage caused by HIV even when one feels “healthy” as well as reduce the chances of onward HIV transmission. Yet, it has been my experience in social research in the Asia-Pacific region that even HIV-positive gay men are likely to be rejected by their potential male sex partners after the disclosure of their HIV positive-status. People who got infected with HIV through male-to-male sex or drug injection are constantly blamed of their own “wrong-doings.” That is the reason why for social research, combating HIV-related stigma and discrimination remains one of our major battle fields.
There are other reasons too why more and better HIV-related social research is needed in the Asia-Pacific region. While it may be scientifically true that HIV infection is just another chronic condition and that people if they take one pill a day of antiretroviral viral treatment immediately after their HIV diagnosis will be just fine, there remains other sociological and psychological factors that need to be taken into consideration. Adjusting one’s life around HIV, for example, is never an easy task. Everyone has a unique path: some are luckier than the others. For most people, receiving their first HIV diagnosis can be a very challenging moment. They need some time and space to grabble with the diagnosis and adjust their everyday lives accordingly. They may need to make a lot of critical decisions, especially when for some, their knowledge and understanding of HIV and its management approaches are still limited.
Also, when and whether or not to start antiretroviral treatment for HIV may not be just a single-handed decision. For many people, it needs personal courage and determination as well as the support from their loved ones, understanding peers, well-informed doctors as well as attentive community leaders. Alongside the scientific evidence of the effectiveness and potential side effects of antiretroviral drugs, there are a myriad lay knowledge of people’s experiences and beliefs to manage their own HIV infection in a more holistic and personally “meaningful” way. For social research, having a deeper and better understanding of people’s lay knowledge and experiences in HIV management can provide more tailored and pertinent support and guidance to people who often think that they are struggling “alone.”
This is especially true because everyone has some unique experiences with HIV or reactions to a particular antiretroviral drug to treat HIV. However, after two decades into the HIV epidemic, globally, we have accumulated a wealth of scientific knowledge, understanding and tools to manage HIV. The fast-paced Internet makes us connected in a way almost beyond imagination. Even if you are living alone in a small island community where no one knows your HIV infection, you can consult some highly professional and trusted websites run by HIV-positive peers and identify resources and support that are close to you. For social research, it is important to map out those available resources and expertise and disseminate such valuable information timely to those who are most disadvantaged because of social, financial or geographic constraints.
While it may be true that university trained researchers are the main forces driving many of the investigations into HIV related research, good quality HIV social research often through close and meaningful collaboration with communities infected and affected by HIV is often overlooked. One way to not allow this to happen is for community organisations and opinion leaders to act as mere data collectors. Not only can communities set and prioritise the research agenda, communities can also work with researchers in generating useful evidence to translate research findings into policy and practices that bring about real changes that impact people’s lives. For social research, building up the capacity of local communities to understand and tackle local issues is one of its key missions.
It is true that a lot of social research uses qualitative methods, such as interviews and focus groups, to understand people and their concerns about an emerging issue. However, it is not true that social research cannot provide hard numbers and therefore should be considered of less value as scientific evidence generated by clinical trials. Social research also uses quantitative methods, such as surveys and observational cohorts to generate estimates, identify trends or assess interactions between factors. Social research often uses a real-life lens to observe and examine issues and real-life situations that are often more complex and interrelated than those established in clinical trials. While every research project, including well-designed clinical trials, has its strengths and limitations, social research, nevertheless, is more concerned about contexts (the “how”) and reasons (the “why”) of certain phenomenon. For example, social research differentiates condomless sex in the context of an intimate relationship from that in the context of an encounter with a stranger and the various meanings behind it (e.g., the pursuit of intimacy, love, pleasure or adventure).
Hence, it is my belief that a meaningful and full containment of the epidemic requires more and better HIV-related social research.