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

Hanne Agerskov*, Helle Thiesson, Kirsten Specht, Birthe D Pedersen

*Corresponding author for this work

Research output: Contribution to journalJournal articleResearchpeer-review

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Abstract

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.

Original languageEnglish
JournalJournal of Clinical Nursing
Volume28
Issue number9-10
Pages (from-to)1482-1490
ISSN0962-1067
DOIs
Publication statusPublished - May 2019

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Kidney Transplantation
Parents
Living Donors
Caregivers
Professional Practice
Reading
Interviews
Pediatrics
Kidney
Health

Keywords

  • experiences
  • family
  • interviews
  • kidney donation
  • kidney transplantation
  • parent
  • qualitative

Cite this

@article{ea82b0794ff6493084540de69e31fd6c,
title = "Parents' experiences of donation to their child before kidney transplantation: A qualitative study",
abstract = "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: na{\"i}ve 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.",
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author = "Hanne Agerskov and Helle Thiesson and Kirsten Specht and Pedersen, {Birthe D}",
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Parents' experiences of donation to their child before kidney transplantation : A qualitative study. / Agerskov, Hanne; Thiesson, Helle; Specht, Kirsten; Pedersen, Birthe D.

In: Journal of Clinical Nursing, Vol. 28, No. 9-10, 05.2019, p. 1482-1490.

Research output: Contribution to journalJournal articleResearchpeer-review

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T1 - Parents' experiences of donation to their child before kidney transplantation

T2 - A qualitative study

AU - Agerskov, Hanne

AU - Thiesson, Helle

AU - Specht, Kirsten

AU - Pedersen, Birthe D

N1 - This article is protected by copyright. All rights reserved.

PY - 2019/5

Y1 - 2019/5

N2 - 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.

AB - 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.

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