Information Needs of People With Limited Health Literacy Regarding a New "Opt-Out" Organ Donation System:A Qualitative Study in the Netherlands

Background: 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. Methods: A qualitativ... Mehr ...

Verfasser: Rademakers, Jany
Rolink, Marlon
Heijmans, Monique
Dokumenttyp: Artikel
Erscheinungsdatum: 2022
Reihe/Periodikum: Rademakers , J , Rolink , M & Heijmans , M 2022 , ' Information Needs of People With Limited Health Literacy Regarding a New "Opt-Out" Organ Donation System : A Qualitative Study in the Netherlands ' , Transplant International , vol. 35 , 10295 , pp. 10295 . https://doi.org/10.3389/ti.2022.10295
Schlagwörter: Adult / Health Literacy / Humans / Netherlands / Organ Transplantation / Qualitative Research / Tissue and Organ Procurement / INFORMED DECISIONS / opt out / EDUCATION / organ donation / CANCER / information / communication
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-29187921
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://cris.maastrichtuniversity.nl/en/publications/f29976a3-ccbb-46d9-a971-7cdce0f63b4b

Background: 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. Methods: A qualitative study was performed; 30 people participated in four focus groups and six individual interviews. Transcripts were coded, interviews were thematically analysed. Results: 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. Conclusion: 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.