Young people’s views on how to encourage family discussion about organ donation

Context: Discussing organ donation wishes with family prior to receiving a request for donation is essential to increase family consent. For young people who have already decided to be a donor (‘young donors’), notifying family is particularly critical. However, many young donors are unaware of the need for this discussion, have low motivation to discuss, and have not notified family of their wishes. Objectives: To explore young donors’ views on, experience with, and suggestions to encourage family discussion, and opinions about advertising/social marketing campaign materials.Participants: Young donors, who were Australian residents (N = 13; 10 females) aged 18-28 years (M = 23.00; SD = 2.74), participated in one of four focus groups. Results: Motivations for family discussion were having their wishes respected by family and reducing family distress. Barriers to discussing were not thinking about it and forgetting unless an immediate opportunity for discussion was provided. Young donors had different approaches to initiating family discussion depending on anticipated family reactions and confidence in discussing; straightforward (‘just say it’) and casual (‘no big deal’) or involving preparation and in-depth discussion. Campaign materials including information and personal stories about transplant recipients were perceived as effective in capturing attention and encouraging family discussion. Conclusions: Gaining the perspective of young donors to encourage family discussion is crucial. Key findings highlighted the need to consider young donors’ approaches to initiating family discussion and incorporating prompts and opportunities to facilitate family discussion in the development of future message appeals.