“What if this is my chance to save my life?” The patient perspective on public solicitation of living kidney donors

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M. Pronk, D. Slaats, W. Zuidema, M.T. Hilhorst, F.J.M.F. Dor, M.G.H. Betjes, W. Weimar, J. van de Wetering, E.K. Massey

Chair(s): Drs. F.M. Molenaar

Thursday 9 march 2017

12:45 - 13:00h

Categories: Poster - Klinisch

Parallel session: Postersessie - Klinisch 5

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A small but increasing number of patients use public solicitation (PS) to find a living kidney donor. This qualitative study explores the decision-making and experiences of these patients. Semistructured interviews were conducted with Dutch 20 public solicitors who had publicly solicited between 2011 and 2015. Interviews were transcribed and analyzed for general themes.  Most patients used multiple channels for PS including social media and more traditional media such as newspapers. Before considering PS participants had not been able to find an eligible donor in their social network. They also rejected the option of paid donation. Participants were motivated to engage in PS by the ease of social media, encouragement by others, patient/donor autonomy, and despair, but feared public disclosure of vulnerability and feared being (perveiced to be) selfish. During PS participants experienced hope, support, and positive (potential) donor contact. However, PS was also a time and energy-consuming process which was experienced as emotionally taxing. Participants had to manage unequal relationships and take on the roll of health professionals, for example screening donor motives and providing education on living donation. During PS they experienced limited cooperation from health professionals and had to rely on their skills and/or personality to manage their donor search. At the time of the interview 4 patients had received a living donor kidney transplant through the PS route, 5 from another type of donor and 11 were still waiting. These results call for improved communication about the new Dutch policy on PS  with patients who are considering engaging in PS, and the development of better support systems to relieve patients of their screening and educating role during the PS process. Greater openness by professionals about this topic may encourage patients to discuss their donor search prior to undertaking PS and create an opportunity for education and counseling during the process.