Nivel, Netherlands Institute for Health Services Research, Utrecht, Netherlands.
Department of Family Medicine, CAPHRI (Care and Public Health Research Institute), Maastricht University, Maastricht, Netherlands.
Transpl Int. 2022 Mar 17;35:10295. doi: 10.3389/ti.2022.10295. eCollection 2022.
In the Netherlands, new legislation on organ donation was implemented, based on a "opt-out" consent system, which means that all adults are presumed to consent for organ donation, unless they actively register their decision not to donate. A public information campaign preceded the law change. In the Netherlands, 29% of the population has limited health literacy (LHL). The aim of the study was to gain insight in the information needs of Dutch citizens with LHL regarding organ donation and the new legislation, as well as in their preferred information channels. A qualitative study was performed; 30 people participated in four focus groups and six individual interviews. Transcripts were coded, interviews were thematically analysed. People with LHL need specific information to make an informed decision on organ donation. Relevant topics: 1) choice options, 2) eligibility, 3) role of partner and/or family, 4) impact on quality of care, and 5) process of organ donation. Information should be easy to understand. Current standard materials are too difficult and abstract. People with LHL require personal support to tailor general information to their personal situation, and practical help to actually register their choice. Suggestions on how to improve information is provided.
在荷兰，新的器官捐赠立法基于“默认同意”制度，这意味着所有成年人都被推定同意器官捐赠，除非他们主动登记表示不同意捐赠。法律修改前进行了一项公共信息宣传活动。荷兰有 29%的人口健康素养有限（LHL）。本研究的目的是了解荷兰具有 LHL 的公民对器官捐赠和新立法的信息需求，以及他们对信息渠道的偏好。进行了一项定性研究；有 30 人参加了四个焦点小组和六次个人访谈。对记录进行了编码，对访谈进行了主题分析。健康素养有限的人需要特定的信息才能就器官捐赠做出明智的决定。相关主题：1）选择选项，2）资格，3）伴侣和/或家人的角色，4）对护理质量的影响，以及 5）器官捐赠过程。信息应该易于理解。当前的标准材料太难且过于抽象。健康素养有限的人需要个人支持，以便将一般信息定制到个人情况中，并在实际注册选择时提供实际帮助。提供了有关如何改进信息的建议。
