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Parents' experiences of donation to their child before kidney transplantation: A qualitative study
Hanne Agerskov1,2, Helle Thiesson1,2, Kirsten Specht3,4
1Department of Nephrology, Odense University Hospital, Odense C, Denmark.
Insights
Parents undergoing living donation for their child
Area of Science:
- Pediatric Nephrology
- Transplantation Surgery
- Family Medicine
Background:
- Living donor kidney transplantation offers superior long-term survival and a more controlled process for pediatric end-stage renal disease patients.
- Parents face the dual challenge of managing their child's complex care and considering living donation.
- Limited research exists on the experiences of parents as both donors and caregivers in pediatric kidney transplantation.
Purpose of the Study:
- To explore the lived experiences of parents considering or undergoing living kidney donation for their child.
- To understand the parental perspective on the decision-making process and emotional impact of donation.
- To identify the support needs of parents throughout the donation and transplantation journey.
Main Methods:
- Qualitative exploratory study employing a phenomenological-hermeneutic approach.
- Interviews conducted with parents of seven children (aged 5-15) awaiting kidney transplantation at a Danish university hospital.
- Data analysis inspired by Ricoeur's theory of interpretation: naïve reading, structural analysis, and critical interpretation.
Main Results:
- The decision for parental donation was often perceived as a natural commitment, with a preference for living donation.
- Refusal as a donor led to feelings of powerlessness, but parents adapted by embracing a supportive caregiver role.
- Approaching family and friends for donation was experienced as a sensitive boundary-crossing act.
Conclusions:
- Parental donation significantly impacts the entire family's well-being, highlighting parental vulnerability and the need for comprehensive support.
- The waiting period involves hopeful anticipation and reflections on evolving caregiver roles.
- Active engagement and open dialogue from healthcare professionals are crucial for addressing individual parental experiences and family well-being.
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.