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Living kidney donation among ethnic minorities: A Dutch qualitative study on attitudes, communication, knowledge and needs of kidney patients

Background: Terminal kidney patients are faced with lower quality of life during dialysis treatment, restricted diets and high morbidity and mortality rates while waiting for a deceased donor kidney transplantation. Fortunately, living donor kidney transplantation offers an alternative with considerable advantages in terms of waiting time and graft survival rates. Nevertheless, we observed an inequality in the proportion of living kidney transplantations performed between the non-European patients and the European patients in our centre. To date little is known about the factors contributing towards this racial disparity. Previous research from our centre did not find any medical reasons to explain this racial disparity. We believe that non-medical psychosocial and cultural factors predominantly account for this discrepancy. 
Purpose Focus group discussions and in-depth interviews were conducted in order to gain insight in the attitudes, (non-)communication and knowledge of our non-European patients (compared to European patients) regarding living donor kidney transplantation (LDKT). Additionally, we investigated their attitudes towards professional support in finding an eligible living donor.
Methods: The interviews were held in line with the focus group method and analyzed according to the grounded theory. The interviews were focused on six main topics (kidney transplantation, living kidney donation, communication, information, knowledge and intervention needs). European patients were included as a comparison group. The qualitative data analyses were performed in Atlas.ti. 
Results:We found nearly all our patient to be in favour of a living kidney transplantation (96%). However multiple prohibiting intertwined factors play a role when actually considering a living donor. We found four major barriers to the living donor transplantation process in our non-European patients: 1) not (so easily) comprehensible non-patient-centered information 2) cognitions and emotions (based on fears, concerns and misconceptions) 3) a state of basically non-communication with the potential donor(s) on this issue (as a consequence of personal and cultural beliefs) 4) and social influences. We also found some similar factors playing a role in the donation course of our European patients without a living donor. Finally, our patients held a welcoming attitude towards an intervention aimed at assisting them getting though the living donation program.
Discussion: This study has identified several modifiable determinants underlying racial disparity in our living donor kidney transplantation program and investigated patients’ attitude towards two interventions aimed at alleviating this inequality. We realize that our list of barriers may not be thorough enough and surely more is to be said on this topic, the findings offer possible targets for intervention. In accordance with our patients’ preference, we argue that a home-based education best suits the complexity of issues and patients’ personal needs.