Information about organ donation: the perspective of people with limited health literacy

Abstract

Abstract Background In 2020, a new law on organ donation will come into force in the Netherlands. This law requires people to actively register their choice whether or not to be an organ donor after death. In this opt-out system, people who do not register themselves are automatically considered to be a donor. To inform the general public, the Dutch ministry of Health launched a communication campaign to inform the general audience. However, people with limited health literacy - 1 in three Dutch adults - have difficulties understanding health related information. Therefore, a study was performed to determine the appropriate information content and communication channels to better address the knowledge needs of this specific target group. Methods The study was done through (a) desk research and (b) 6 individual interviews and 4 focus groups with people with limited health literacy (total 30 people). The respondents were recruited through organisations that focus on specific populations with limited health literacy (limited reading and writing skills, minor intellectual disabilities, migrants). Results Most respondents had not heard about the new law on organ donation. Those who were aware of the law did not know what the law entails and what was required of them. The content of the information currently used were generally considered too difficult and abstract and did not give the respondents enough input on which to base a decision whether or not to be an organ donor. People with limited health literacy can mention specific topics on which they want information. Furthermore, they want practical help in registering their choice through the website. As information channels they prefer simple films and narratives of other people. Conclusions People with limited health literacy need more specific information on organ donation and what the new law entails. They have a preference for films and narratives. Furthermore, they need practical help in registering their choice. Key messages Current information on the new Dutch law on organ donation is too difficult and does not address the knowledge needs of people with limited health literacy. Films and narratives are preferred information channels of people with limited health literacy.