Eight years of investigating elderly parents caring for adult children with HIV/AIDS in Thailand have yielded unexpected information: community attitudes towards the families and individuals living with AIDS are generally sympathetic and much more so than commonly thought.
Tulane University international public health researcher Mark VanLandingham and colleagues published this research in a recent issue of the Journal of Health and Social Behavior.
"These data are significant because the prevailing belief before our study was that in developing countries people with AIDS or with a family member with AIDS are generally treated very poorly, that they are generally stigmatized," says VanLandingham, who has worked on research in Thailand on a variety of topics for over 15 years. "Addressing stigma where it exists is important because the fear of being treated badly can prevent people from taking precautions to prevent the spread of HIV, from getting tested and from getting the right medical care."
Although stigma should continue to be addressed, VanLandingham says these findings could help organizations more effectively allocate resources towards other ways of helping families.
"In Thailand and most developing countries, when an adult gets AIDS they don't go to a hospital or a hospice for long-term day-to-day care, but home to their parents. Most of these parents are in their 50s and 60s, with some in their 70s, and were expecting to be taken care of by their children either now or later when they get older.
"Instead, they have to carry their sick adult children, clean them, sit up all night with them, get them medical care, and many of them have to give up whatever work they were doing to care for their children. The lion's share of the work falls on the mothers," VanLandingham says. Visiting nurses who can help with care and simply provide a sympathetic ear would be a great help.
Thailand is known for its success in reducing new cases of HIV through public health campaigns and education, and there are recent exciting developments involving expanding access to ARV medication. However, Thailand is still comparable to many other developing nations in terms of the experience of dying from HIV/AIDS.
Recent data shows that one in 64 Thai adults is HIV positive. As with patients in other developing countries, the disease is spread primarily through heterosexual sex, often kills very quickly once symptoms appear, and leaves HIV-infected individuals to be cared for in the context of their families and within very close-knit communities.
The study is one of the very few to take a population-based approach to understanding community attitudes toward HIV-infected people. The researchers talked to community health volunteers and health officials throughout Thailand, parents who lost adult children to HIV (and parents who did not), as well as people living with HIV. Although a quarter of the parents reported at least some negative treatment, such as neighbors who stopped coming to visit or stopped patronizing a parent's business, the vast majority said community members were sympathetic and often offered to help if they could. Moreover, negative reactions, where they occurred, were usually short-lived.
The research yielded another result that contradicts much existing anecdotal research - women with HIV were more likely to report sympathetic responses than men. That makes sense given the context, says VanLandingham, as women often contract the disease from their husbands, whereas men usually contract HIV from sex workers, making them much less worthy of sympathy in the eyes of the community.
