Bootcongres

Background. Unspecified donation to a genetically and emotionally unrelated recipient now makes up 7% of living donation in the Netherlands. The aim of this project was to explore the ideas of experienced experts, unspecified donors themselves, regarding promotion of unspecified donation. Method. All unspecified donors in the Netherlands (N=140) were invited to participate in simultaneous focus groups. Fifty-five donors participated and were divided at random into 6 groups. A transplant professional moderated each group in answering the following questions: should unspecified living donation be promoted; what could the content of such a campaign be; who could play a role; who should the target group be; and who could finance such a campaign? Each group recorded the discussion on flip-over charts. In a subsequent plenary session, similarities and differences between the groups were discussed in order to reach consensus. Results. Donors were unanimous that initiatives should aim at education and raising awareness rather than donor recruitment. Arguments for educational initiatives (e.g. contributing to reducing the deceased donor waiting list) outweighed the arguments against (e.g. social pressure and commercialism). Education programmes were seen as necessary to remove taboos and misconceptions surrounding unspecified living donation but should satisfy a number of conditions such as providing honest and ethically responsible information. Terms such as Samaritan’ and ‘altruist’ should be avoided due to unacceptable connotations. Given their personal experience, donors saw themselves as potential ambassadors to lead educational efforts. Ideas for funding ranged from patient societies and foundations to the post-code lottery. Potential target (sub)groups included philanthropic groups such as blood donors and relatives of deceased donors as well as professionals (e.g. general practitioners). Ideas for practical implementation ranged from wearing the living donor pin to adding the option of (receiving information on) living donation to the deceased donation registration form. Discussion. In this unique initiative a large number of unspecified living donors were brought together to discuss awareness raising of anonymous living donation. Donors’ perspectives and their potential role as ambassadors should be considered when developing educational initiatives to promote anonymous living donation.