Understanding barriers and enablers to altruistic kidney donation V:1
Research type
Research Study
Full title
Understanding barriers and enablers to altruistic kidney donation in a social group context
IRAS ID
155514
Contact name
Annie Mitchell
Contact email
Sponsor organisation
Royal Devon and Exeter Hospitals
Duration of Study in the UK
1 years, 3 months, 1 days
Research summary
Altruistic kidney donors are living donors who choose to donate a kidney to an unknown recipient on the waiting list. This study aims to identify and understand the experiences of altruistic kidney donors and their families who complete and do not complete donation. We are aiming to understand what factors lead some donors to withdraw from the process of donation and what influence their families have in this decision.
Clinicians and donors alike have identified that altruistic kidney donation leads to stresses and tensions in family relationships. Donors have reported that this has negatively affected their subjective experience of donation. Clinicians have reported that these tensions have led to potential donors withdrawing from the process, often after they have already been to multiple clinic appointments involved in suitability assessment.
How the families of altruistic donors perceive and experience their relative donating altruistically is not well understood. We do not know why some donors choose to opt out of the donation process and how this is influenced by their social support network. We also do not understand under what conditions these experiences vary and the impact of health services on those experiences.
This study aims to address these gaps in knowledge and explore factors that influence the altruistic donors and their family's experiences. We will do this by interviewing altruistic donors and their families who both complete and withdraw from the donation process. We will ask donors about what factors both facilitated their donation and what made it more difficult or led to them withdraw. We will ask families about their perspectives and the support that they received from the transplant services.
We are aiming to produce information that will improve clinicians' practice and written information specifically for the families of altruistic kidney donors that targets their concerns about the process.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
14/SW/1105
Date of REC Opinion
26 Nov 2014
REC opinion
Further Information Favourable Opinion