Knowledge, Attitudes and Practices about Sickle Cell Anemia in Tharu Communities of Kailali, District of Nepal

In the lowlands of southern Nepal, where the Terai plains stretch toward the Indian border, lives the Tharu community, an indigenous people with a distinct culture and history. For generations, they have shared a specific genetic trait that, while harmless on its own, can become a severe health crisis under certain conditions. This condition is sickle cell anemia, a hereditary blood disorder. To understand it, imagine the red blood cells that carry oxygen through the body as soft, round discs that flow easily through tiny vessels. In people with sickle cell anemia, a change in their genetic code causes these cells to harden and curl into a crescent shape, resembling a farming tool called a sickle. These rigid, misshapen cells cannot move smoothly; they get stuck, blocking blood flow and causing intense pain, organ damage, and a chronic shortage of oxygen. While carrying just one copy of the gene, known as the sickle cell trait, usually causes no symptoms, inheriting two copies leads to the full-blown disease. Because this genetic variation offers some protection against malaria, it has persisted in populations living in malaria-prone regions, including parts of South Asia. However, when two carriers have children, there is a significant chance those children will inherit the disease, creating a cycle of suffering that is difficult to break without awareness and medical intervention.

A team of researchers from Pokhara University set out to understand how well the Tharu people in the Kailali district of Nepal know about this condition and what they do to prevent it. They conducted a mixed-method study, combining detailed surveys with in-depth conversations, to map the landscape of knowledge, attitudes, and daily practices regarding sickle cell anemia. The team visited two municipalities in Kailali, Janaki Rural Municipality and Tikapur Municipality, where the Tharu population is particularly high. They spoke with 386 adults from the community, asking them about their understanding of the disease, their feelings toward those affected, and whether they had taken steps to test their own blood or seek counseling. To get a fuller picture, they also interviewed seven local health workers and officials who manage clinics and health programs in the area. The goal was not just to count how many people knew the facts, but to see if that knowledge translated into action, such as getting screened before marriage or seeking early treatment for children.

The results revealed a striking gap between what people feel and what they know or do. The community holds a remarkably positive attitude toward the disease; almost all participants (99.5%) showed a favorable attitude toward sickle cell anemia, with only a tiny fraction (0.5%) holding a poor attitude. However, this goodwill was not matched by understanding. Less than half of the people surveyed possessed a good grasp of how the disease works, how it is inherited, or what its symptoms are. Even more concerning was the lack of preventive action. Only about one in five participants had actually taken steps to prevent the disease, such as getting tested to know their own genetic status or receiving counseling before starting a family. The vast majority remained unaware of their carrier status, leaving the genetic transmission of the disease unchecked.

The researchers found that certain factors made a difference in whether a person took these protective steps. People between the ages of thirty-three and forty-eight were more likely to engage in prevention than younger adults, perhaps because they are at the stage of life where marriage and childbearing are immediate concerns. Education played a crucial role as well; those who had completed secondary school were nearly four times more likely to have taken preventive measures than those with no formal schooling. Surprisingly, the study found that people living in rural areas were more active in seeking prevention than those in urban towns. This counterintuitive finding suggests that rural municipalities may have been more successful in organizing specific screening camps and health programs targeted at the Tharu community, whereas urban centers, despite having more infrastructure, may have failed to reach their residents with the same focused intensity.

Through their conversations with health workers, the researchers uncovered the barriers that keep this knowledge from becoming action. While the community is generally open, there is a deep lack of clarity about how the disease spreads. Many people know the term "sickle cell" but do not understand that it is a genetic condition passed down from parents, nor do they know the specific steps to avoid passing it to their children. Health officials noted that while some screening happens, it is often irregular and dependent on special programs rather than being a standard part of routine healthcare. There is also a shortage of trained staff and a lack of consistent counseling services. Furthermore, economic constraints and the distance to testing centers in remote areas prevent many from accessing care. The fear of social judgment, though less severe than in the past, still lingers, causing some individuals to hide their condition rather than seek help.

The study concludes that while the Tharu community in Kailali is ready to accept and support those with sickle cell anemia, they are not yet equipped with the knowledge or the systems needed to stop the disease from spreading. The positive attitude is a strong foundation, but without better education and more accessible testing, the cycle of inheritance will continue. The researchers suggest that future efforts must focus on bridging the gap between attitude and practice. By providing clear, accessible information and ensuring that screening and counseling are available to everyone, regardless of where they live or how much money they have, the community can move from simply accepting the disease to actively preventing it. The path forward lies in turning the community's goodwill into informed action, ensuring that the next generation is born free from this preventable burden.