Parents' experiences of donation to their child before kidney transplantation: A qualitative study

AIM AND OBJECTIVES: To explore parents' experiences of donation to their child before kidney transplantation.

BACKGROUND: Transplantation is the treatment of choice for paediatric patients with end-stage renal disease. Living donor kidney transplantation has shown a higher long-term transplant survival compared to deceased donor transplantation and entails a more controllable process, with shorter waiting time. Besides complex care and treatment of their child, parents must reflect on the prospects of being a donor for their child. However, little is known about the parent donor and parent caregiver perspective.

DESIGN: A qualitative exploratory study taking a phenomenological-hermeneutic approach.

METHOD: The study was conducted in a Danish university hospital. Interviews were conducted with the parents of seven children, aged between 5-15 years, with end-stage renal disease in the period before kidney transplantation. Data were analysed with inspiration from Ricoeur's theory of interpretation on three levels: naïve reading, structural analysis and critical interpretation and discussion.

RESULTS: The decision about donation was experienced as a matter of course and commitment. There were preferences for a kidney from a living donor, including the hope of being accepted as a donor. Being refused as a donor revealed feelings of powerlessness. However, transformation was performed into having a new role providing care and comfort to the child during the transplant process. Asking family and friends about donation could feel like crossing a line.

CONCLUSION: The prospect of donating to one's child had an impact on the well-being of the entire family. Parents were in a vulnerable situation and in need of support, regarding both living and deceased donation. Waiting time included hopeful thoughts and reflections on a new caregiver role for the child during transplantation.

RELEVANCE TO CLINICAL PRACTICE: Health professionals' attention, engagement and dialogue are essential in order to gain extensive and varied knowledge about the individual parent's experiences and the well-being of the entire family to provide care and support before, during and after the donation and transplantation process.