Understanding the Barriers to Organ Donation Under Opt-out Legislation

Abstract Background: Although transplantation rates around the world have increased by 7% since 2015, existing rates of transplantation fulfil less than 10% of global need. In the United Kingdom, approximately three people die every day as a result of the donor shortage. To increase the donor pool, England, Scotland and Wales have reformed donor legislation by implementing opt-out consent. Emotional barriers are key organ donation deterrents under opt-in consent, however, limited research has explored barriers under opt-out consent. The aim of this thesis was to conduct an in-depth, mixed-methods investigation into the barriers to organ donation under opt-out legislation. Methods: This thesis encompassed five studies: (Study 1) a questionnaire study (n =1202) measuring opt-out intentions, emotional barriers and testing the efficacy of an NHS “myth-busting” intervention, (Study 2) a thematic analysis of free-text responses from the above study (n =923) which explored the reasons behind donor choices under opt-out consent, (Study 3) a qualitative interview study (n =15) which explored attitudes to opt-out consent with individuals who intend to opt-out and, (Study 4) an online study (n =1352) which investigated language and message framing used in opt-out campaigns on the development of reactance and its impact on donor intentions. Lastly, Study 5 encompassed a systematic review of the factors influencing family decision-making for organ donation. Findings and Conclusions: Emotional barriers, namely a desire to preserve bodily integrity and medical mistrust are key deterrents under an opt-out donation system. Psychological reactance and perceptions of unwarranted government control represented unique barriers influencing donor-relevant decisions. Subtle language and framing manipulations within opt-out communication campaigns influenced the development of psychological reactance and one’s donor intentions. Consideration of the most effective ways of communicating this sensitive legislative change is critical to mitigate reactance and reduce the number of opt-out respondents.