Suspended will: The ethical journey of paediatric stem cell donors
Xinyu Zhu, Yun Gao, Jiasi Li, Meng Li, Fuyong Yang, Rongrong Guo, Xinmiao Chen, Yingying Wang, Huiying Xu, Xiaoqin FengBackground
In allogeneic haematopoietic stem cell transplantation, paediatric donors may have limited involvement in donation decisions, as their psychological experiences and ethical needs may receive less attention when prioritising the recipient’s survival.
Objective
This study explored paediatric donors’ experiences of autonomy, competence, and relatedness throughout the donation process, using Self-Determination Theory (SDT) as a sensitising interpretive lens to examine implications for ethically sensitive nursing practice.
Design
Interpretative phenomenological analysis (IPA).
Participants and research context
Nine paediatric donors aged 7–17 years were recruited in our centre between December 2025 and March 2026. Semi-structured interviews were conducted during haematopoietic stem cell collection or the early post-collection recovery period. Purposive sampling was used, and data collection and analysis proceeded concurrently. After initial analysis of seven interviews, two further interviews were conducted to explore experiential variation and refine interpretation.
Ethical considerations
Ethical approval was granted by the hospital ethics committee, and dual informed assent procedures were adhered to for all participants.
Results
Interpretative phenomenological analysis generated three stage-specific experiential themes across the donation journey and two cross-cutting contextual themes. Paediatric donors experienced constrained participation during the Informed Consent and Donor Matching Periods, relationally mediated distress and support during the Mobilisation and Collection Periods, and meaning reconstruction during the Post-collection Early Recovery Period. Throughout the journey, disrupted family dynamics and insufficient explanations shaped children’s experiences.
Conclusion
Paediatric donation involves ongoing tensions in children’s psychological needs, participation, and relational experiences. Nursing ethics should move beyond procedural safeguards towards approaches that recognise children as relational ethical subjects. Supporting communication, acknowledging suffering, and facilitating children’s narratives may help safeguard their dignity and participation throughout donation.