As Founder and principal investigator for VOICE (Views On Interdisciplinary Childhood Ethics), a 9I制作厂免费-based international initiative to advance knowledge and practices relating to ethical concerns in childhood, Franco Carnevale, RN, PhD, has devoted the bulk of his 46-year career to maximizing the participation of children and youth in their care.
As he explains, there is a widespread tendency across many cultures to view children as cute, immature and incapable of decision-making. 鈥淲e start from the premise that children have moral agency and a right to be heard in decisions that will impact them,鈥� explains Carnevale, who is a Professor at the Ingram School of Nursing and holds cross-appointments in the Faculty of Medicine (Pediatrics & School of Population and Global Health) and Counselling Psychology. He also serves as Clinical Ethicist for child and youth services at the Douglas Mental Health University Institute, Chair of the Clinical Ethics Committee at the Shriners Hospital for Children, and Clinical Ethics Consultant at The Lighthouse, Children and Families (a pediatric hospice).
Prof. Carnevale鈥檚 鈥渁ha moment鈥� occurred in 2006, when he was conducting a study with disabled children living at home with respiratory assistive technologies. 鈥淲e went in with the assumption that the lives of these children would be extremely difficult, yet, we saw how much they contributed to their families鈥� lives.鈥� This realization set Prof. Carnevale on a path of developing and testing innovative methods to elicit and interpret children鈥檚 verbal and non-verbal expressions regarding their care. Crucially, this work encompasses children听with neurodiversity, mental health problems and other complex challenges that may impact their ability to communicate.
Prof. Carnevale set to work building the collaborations that are at the heart of VOICE. 鈥淚n 2020, Richard and Satoko Ingram of the Newton Foundation gave us a generous donation that sent us into the big leagues,鈥� he recalls. He remains grateful to the Ingrams for continuing to champion the work of VOICE, and to former Ingram School of Nursing Director Anita Gagnon for giving VOICE a physical home at the School. 鈥淭he donation was based on a pledge by the School to provide access to resources such as clinical lab simulations and to commit to promoting our Children鈥檚 Nursing Framework within our curriculum,鈥� he notes.
Exposing today鈥檚 students to these innovative concepts in children鈥檚 nursing is a labour of love for Carnevale and ISoN colleagues who are key members of the VOICE team: Amanda Cervantes, Argerie Tsimicalis and Marjorie Montreuil. Additional projects include working with the Office of Social Accountability in Nursing on materials specific to Indigenous children, and with the Continuing Nursing Education Office to develop online materials. 鈥淲e are excited to expose students and practicing nurses to these innovative, emerging ideas that will help them develop and refine their nursing practice.鈥�
Five new publications at the close of 2024 鈥� two of which were led by graduate students 鈥� illustrate the breadth and depth of VOICE鈥檚 reach. In 鈥溾��, Prof. Carnevale calls for an urgently-needed restructuring of children鈥檚 nursing theory and practice. A study titled 鈥溾�� provides an ethical framework for addressing and mitigating ethical concerns. A paper on , co-authored by 14 researchers from nine countries, invites an expanded understanding of children鈥檚 grief in response to death and other losses - one that is predicated on the notion that children are actively involved in shaping and contributing to their experiences. ISoN students Ariane Gautrin, Yi Wen Wang and Raissa Passos dos Santos were the lead authors on a study that created and evaluated an for graduate nursing students addressing ethical considerations for children undergoing surgery.
With hundreds of peer-reviewed publications to its credit and a growing list of international collaborators, VOICE has a well-established reputation as an authority on childhood ethics. Most recently, Health Canada awarded VOICE a major grant to solicit young people鈥檚 views on palliative care and MAID (Medical Assistance in Dying) for minors. A second grant, awarded by the SSHRC (Social Sciences and Humanities Research Council), will support research into how best to involve young people in research, policy-making, clinical practice and curriculum design.
In 2020, in recognition of his outstanding contributions to the nursing profession, Prof. Carnevale received the from the Ordre des infirmi猫res et infirmiers du Qu茅bec (OIIQ) 鈥� the highest honour it awards to nurses.
Celebrating his 40-year association with 9I制作厂免费 and the ISoN, and 47 years as a nurse and ISON graduate, Prof. Carnevale has no plans to slow down just yet. 鈥淚t鈥檚 exciting to be at the forefront of research that helps amplify children's voices in their care here in Canada and around the world,鈥� he concludes.
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