Related Experiment Video
Updated: May 5, 2026
Murine Kidney Transplant Technique
Published on: October 20, 2015
A Mixed Method Study in Young Children Participating in Clinical Research During A Kidney Transplantation Trajectory
Marieke Voet1, Guusje Lucker1, Ignacio Malagon1
1Department of Anaesthesiology, Pain and Palliative Care, Radboud University Medical Center, GA Nijmegen, the Netherlands.
Insights
Children often don't know they are in clinical research and experience varied burdens. Improving pediatric clinical research requires better communication, planning, and age-appropriate engagement to enhance children's experiences.
Area of Science:
- Pediatric Clinical Research
- Medical Ethics
- Child Psychology
Background:
- Regulations protecting children in research can limit data availability for age-specific therapies.
- Limited data exists on children's experiences in clinical research, especially those undergoing intensive medical treatment.
Purpose of the Study:
- To explore the experiences of young children and their parents participating in clinical research during a kidney transplantation trajectory.
- To identify factors influencing children's perceptions and burdens associated with clinical research participation.
Main Methods:
- Mixed-methods approach utilizing semi-structured interviews and DISCO-RC questionnaires.
- Involved nine children undergoing kidney transplantation and their parents.
Main Results:
- Most children were unaware of their study participation and whether procedures were standard care or research-related.
- Experiences varied, with positive aspects including supportive staff and educational opportunities, and negative aspects including poor communication and hospital time.
- Venous puncture was universally stressful, while other procedure discomfort varied among children.
Conclusions:
- Pediatric clinical research designs should prioritize education, engagement, and fun during procedures.
- Effective strategies include smart planning, consistent communication, and age-appropriate distraction techniques.
- Close collaboration between clinical and research teams is crucial for optimizing children's research experiences.
Introduction:
Regulations designed to protect children participating in clinical research often restrict the availability of research data necessary for the development of age-specific therapies and drug dosing. Few data exist on how children experience participation in clinical research, and studies investigating young children undergoing an intensive medical treatment are lacking.
Methods:
Mixed methods with semi-structured interviews and DISCO-RC questionnaires were used to explore young children's and their parents' experiences in clinical research participation during a kidney transplantation trajectory.
Findings:
Nine children and their parents were interviewed. Children's median age at kidney transplantation was 4 years (IQR 4,7); age at interview was 7 years (IQR 6,9). Thematic content analysis of interviews revealed that most children were unaware of having participated in a study. Both children and their parents frequently were unaware whether procedures were standard care or research related. The additional burden attributed to study participation varied from not at all to heavy in combination with intensive medical treatment. Positive experiences included kind healthcare professionals, effective distraction techniques, educational aspects, contributing to science and extra check-ups. Most reported negative experiences were conflicting communication, spending much time in the hospital, missing school and suboptimal planning. Venous puncture was stressful for all children, whereas the discomfort of other procedures varied.
Conclusion:
Pediatric clinical research design should focus on education and fun during research procedures, smart planning, consistent communication, close collaboration between clinical and research team and age appropriate distraction techniques.
Related Concept Videos
01:45Kidney Structure
01:28Kidney Transplant I: Introduction
01:26Kidney Transplant II: Surgical Procedure
01:16Kidney Transplant III: Nursing Management
01:28Imaging Studies I: Kidney, Ureter, and Bladder Studies
01:30Acute Kidney Injury IV: Diagnostic Studies and Prevention