Translation, cultural adaptation, and psychometric validation of the Death Literacy Index for Sinhala-speaking populations in Sri Lanka: a cross-sectional validation study

In many parts of the world, the end of life is treated as a medical event that happens in a hospital, managed by professionals who hold the keys to information and resources. But a growing movement in public health suggests that dying is also a community experience, one where families and neighbors play a central role. This perspective relies on a concept called death literacy. It is not about knowing medical facts alone; it is the collection of skills, knowledge, and emotional capacity that allows a person to navigate the difficult journey of caring for someone who is dying. It includes knowing how to talk about death, how to perform physical care like feeding or bathing, and how to find help when the family needs it. When a community has high death literacy, people are better prepared to make choices that honor the wishes of the dying person, leading to a more peaceful and dignified final chapter.

For decades, researchers have tried to measure this literacy to see where communities stand and where they need support. In Australia, a team created a specific survey called the Death Literacy Index to ask people about their knowledge and experiences. This tool has since been adapted for use in countries like the United Kingdom, Sweden, and China, helping researchers understand how different cultures handle the reality of dying. However, a significant gap remained in South Asia. Sri Lanka is facing a rapid shift in its population, with the number of elderly people growing faster than almost anywhere else in the region. As the population ages, the need for care at the end of life is becoming urgent. Yet, until now, there was no way to measure death literacy in the country's most widely spoken language, Sinhala. Without a tool to ask the right questions, health planners and doctors could not see what families knew, what they feared, or where they needed the most help.

To fill this gap, a team of researchers from several Sri Lankan universities and hospitals set out to translate and test the Death Literacy Index for Sinhala speakers. They did not simply translate the words from English to Sinhala; they carefully adapted the questions to fit the local culture, ensuring that the ideas behind them made sense to people living in Sri Lanka. The team recruited 302 family caregivers from a teaching hospital in Colombo. These were people who were currently caring for a sick relative, ranging from parents to children, and they represented a mix of ages, education levels, and backgrounds. The researchers asked these caregivers to answer the survey questions, which covered everything from practical tasks like bathing a patient to more complex topics like legal documents and community support groups.

The results of this study revealed a picture of death literacy that was both familiar and unique to the Sri Lankan context. The survey proved to be a reliable tool, meaning it consistently measured what it was supposed to measure. However, the way the answers clustered together told a different story than the original version of the survey found in Australia. In the original model, talking about death and physically caring for a dying person were seen as two separate skills. In Sri Lanka, the data showed that these two things were deeply intertwined. For the caregivers in this study, the act of caring for a relative was not just about physical tasks; it was also the primary way they communicated love, support, and presence. The survey results suggested that in this culture, you cannot separate the words spoken from the hands that care for the body; they are part of the same unified experience.

Another striking finding was the difference between what families knew about each other versus what they knew about the formal system. The caregivers showed a very high level of confidence and skill in the practical, hands-on aspects of care. They knew how to feed, bathe, and comfort a dying relative, and the survey results showed that almost everyone felt capable in these areas. This high level of skill appeared to be a natural part of Sri Lankan family life, reinforced by cultural traditions and religious beliefs that view caring for the sick as a moral duty and a source of spiritual merit. However, the same caregivers showed very little knowledge about the formal structures that surround death. When asked about legal paperwork, advance care planning, or how to access professional support groups, many participants did not know where to start or what these things even were. The survey results showed a clear gap: families were experts at caring for each other at home, but they were largely unaware of the institutional resources available to them.

The researchers also found that the survey grouped the answers into five main themes rather than the six themes found in the original Australian version. One of these new themes combined knowledge about medical facts with knowledge about community resources. This suggests that in Sri Lanka, people do not draw a sharp line between what they learn from a doctor and what they learn from their neighbors or religious community. The knowledge flows freely between these sources, creating a single, blended understanding of how to handle death. This finding challenges the idea that formal medical knowledge and informal community wisdom are always separate things.

While the study confirmed that the Sinhala version of the survey is a valid and useful tool, the researchers were careful to note its limits. The study was conducted in a single hospital in the capital city, so the results might not perfectly represent families in rural villages or those who have never interacted with the healthcare system. The researchers also noted that they had not yet tested the survey over time to see if the scores remained stable, nor had they fully compared the results with other measures of fear or knowledge. These are necessary next steps to ensure the tool works everywhere in the country.

Ultimately, this work provides a crucial first step for public health in Sri Lanka. By showing that families are already highly skilled at the practical and emotional work of dying, but are often left in the dark about formal support systems, the study points the way forward. It suggests that future programs should not try to teach families how to care for their loved ones, as they already know how to do that. Instead, the focus should be on bridging the gap between that deep, family-based knowledge and the formal services that exist to help them. The Sinhala Death Literacy Index now offers a way to measure this gap, allowing health planners to design better support systems that respect the strong, existing culture of family care while gently guiding families toward the resources they need to navigate the end of life with confidence.