Abstract
Introduction: Despite the potential to shorten waitlists for life-saving transplants, infant organ donation is rare globally (1). Infant donors (less than one year of age) can reduce waitlist mortality for both infants and children who require size-matched organs like hearts and lungs, and adults who can receive kidney transplants from infant donors (2). Infants can donate their organs after death by circulatory criteria (DDCC) (i.e., the heart stops beating)(1) if the death follows the withdrawal of life-sustaining measures (WLSM) (i.e., mechanical ventilation and hemodynamic supports like vasopressors). However, donation rates are very low(2). Providers have reported rarely offering donation due to concerns about how to introduce the topic of organ donation without causing additional distress to the family(3). Understanding bereaved parents’ perspectives on infant organ donation and how this option could be discussed with them is an important first step in guiding practice, but no studies have explored parent perspectives on infant DDCC. Understanding these perspectives is essential to improving family-centred care and donation counselling practices.
Method: We are conducting a study using interpretive description to explore parent perspectives on infant organ donation and the process of DDCC in NICUs and PICUs. This study has been co-designed with two parent partners. We are conducting individual, semi-structured interviews with parents of an infant who died after a planned WLSM about their perspectives on the potential for and process of infant DDCC. Data analysis is an iterative and evolving process involving in vivo and then axial coding, merging codes into categories and categories into higher-level themes.
Results: Parent partners have contributed meaningfully to the study's design. Preliminary results from interviews will be available by the time of the conference.
Conclusion: This co-designed interpretive description study seeks to illuminate bereaved parent perspectives on infant organ donation and the process of DDCC. By involving parent partners throughout, the study prioritizes family-centered research. Findings will inform donation counseling practices and policies that align more closely with family needs and values in NICU and PICU settings. The collaborative approach offers a model for meaningful parent engagement in sensitive pediatric research.
Notes
Presenter notes available in attached slide deck. To see the notes in Adobe Acrobat, go to Tools > Comment or look at your Layers Panel. If the notes were saved as comments or layers, you can toggle them visible.
References:
1. Weiss M, Sherry W, Hornby L. Pediatric donation after circulatory determination of death (pDCD): A narrative review. Paediatr Respir Rev. 2019;29:3-8. doi:10.1016/j.prrv.2018.03.006
2. St Louis J, Weiss M, Al-Ayass S, et al. Infant organ donation after circulatory death: A literature scoping review. Pediatr Crit Care Med. 2025;in press.
3. Ali F, Chant K, Scales A, Sellwood M, Gallagher K. An exploration of neonatal staff knowledge and attitudes towards neonatal organ donation. J Neonatal Nurs. 2025;31(2):101589. doi:10.1016/j.jnn.2024.11.004
Sigma Membership
Non-member
Lead Author Affiliation
University of Toronto, Toronto, Ontario, Canada
Type
Presentation
Format Type
Text-based Document
Study Design/Type
Other
Research Approach
Qualitative Research
Keywords:
Hospice, Palliative Care, End-of-Life, Acute Care, Ethics, Organ Donation, Parent Attitudes, Organ Donation & Ethics, Infant Organ Donation
Recommended Citation
St Louis, Julia; Wright, Amy L.; Dhanani, Sonny; Keown-Stoneman, Charles; Woolfsmith, Jennifer; Joseph, Danielle; and Widger, Kimberley, "Parent Perspectives on the Potential for and Process of Infant Organ Donation" (2026). International Nursing Research Congress (INRC). 17.
https://www.sigmarepository.org/inrc/2026/presentations_2026/17
Conference Name
37th International Nursing Research Congress
Conference Host
Sigma Theta Tau International
Conference Location
Toronto, Ontario, Canada
Conference Year
2026
Rights Holder
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record. All permission requests should be directed accordingly and not to the Sigma Repository. All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Date of Issue
2026-07-22
Parent Perspectives on the Potential for and Process of Infant Organ Donation
Toronto, Ontario, Canada
Introduction: Despite the potential to shorten waitlists for life-saving transplants, infant organ donation is rare globally (1). Infant donors (less than one year of age) can reduce waitlist mortality for both infants and children who require size-matched organs like hearts and lungs, and adults who can receive kidney transplants from infant donors (2). Infants can donate their organs after death by circulatory criteria (DDCC) (i.e., the heart stops beating)(1) if the death follows the withdrawal of life-sustaining measures (WLSM) (i.e., mechanical ventilation and hemodynamic supports like vasopressors). However, donation rates are very low(2). Providers have reported rarely offering donation due to concerns about how to introduce the topic of organ donation without causing additional distress to the family(3). Understanding bereaved parents’ perspectives on infant organ donation and how this option could be discussed with them is an important first step in guiding practice, but no studies have explored parent perspectives on infant DDCC. Understanding these perspectives is essential to improving family-centred care and donation counselling practices.
Method: We are conducting a study using interpretive description to explore parent perspectives on infant organ donation and the process of DDCC in NICUs and PICUs. This study has been co-designed with two parent partners. We are conducting individual, semi-structured interviews with parents of an infant who died after a planned WLSM about their perspectives on the potential for and process of infant DDCC. Data analysis is an iterative and evolving process involving in vivo and then axial coding, merging codes into categories and categories into higher-level themes.
Results: Parent partners have contributed meaningfully to the study's design. Preliminary results from interviews will be available by the time of the conference.
Conclusion: This co-designed interpretive description study seeks to illuminate bereaved parent perspectives on infant organ donation and the process of DDCC. By involving parent partners throughout, the study prioritizes family-centered research. Findings will inform donation counseling practices and policies that align more closely with family needs and values in NICU and PICU settings. The collaborative approach offers a model for meaningful parent engagement in sensitive pediatric research.
Description
Infant organ donation can save lives but remains rare worldwide. This study explores bereaved parents’ perspectives on infant organ donation to inform family-centred counselling practices. Using interpretive description, we are conducting semi-structured interviews with parents whose infants died following planned WLSM. The study was co-designed with two bereaved parent partners. The project also demonstrates a model for meaningful parent engagement in pediatric end-of-life research.