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ABSTRACT
Background
Transition from paediatric to adult care is challenging for youths with a chronic condition. Most transition programmes place high value in autonomy and independence. We undertook a qualitative study to: (1) identify the needs and aspirations of youths and (2) better understand the well-being and flourishing of youths.
Methods
Semi-structured interviews were conducted with youths, parents of youths and healthcare professionals recruited from four clinics. Thematic analysis focused on: (1) perceptions of transition; (2) key aspects of human flourishing during transition; and (3) salient concerns with respect to the transition and dimensions of human flourishing.
Results
54 interviews were conducted. Perceptions of transition clustered around: (1) apprehension about adult care; (2) lack of clarity about the transition process; (3) emotional attachment to paediatric healthcare professionals; (4) the significance of the coinciding transition into adulthood. Fourteen salient concerns (e.g., Knowledge and information about the transition, Parental involvement in healthcare) were identified with corresponding recommendations. Salient concerns related to important dimensions of human flourishing (e.g., environmental mastery, autonomy).
Discussion and conclusion
The flourishing of youths is affected by suboptimal transition practices. We discuss the implications of our findings for environmental mastery, contextual autonomy, and the holistic and humanistic aspects of transition.
Acknowledgments
We would like to thank Aline Bogossian, Anne-Marie Tremblay, and Josée Lamarche for feedback on previous versions of this manuscript and on the design of this study. We would like to thank Sophie Ji for proofreading the article and members of the Pragmatic Health Ethics Research Unit for their insightful comments on this manuscript. Special thanks to Rocio Gutierrez Rojas for her help with the clinical research coordination of the study. We are grateful for the generous and active participation of youth, parents, and healthcare professionals in this study.
Disclosure statement
No potential conflict of interest was reported by the authors.
Supplementary material
Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2023.2278904
Notes
1. In Ryff and Singer’s model, the concept of flourishing and the concept of psychological well-being are used interchangeably. We only use human flourishing given its deep theoretical connection to ethics and also avoid using two terms.
2. The COVID-19 pandemic undermined our ability to truly instil a strong participatory orientation during the initial phase of the study reported here. We had to change our approved protocol to move from focus group interviews to individual interviews and the entire spirit of engagement and participation we were seeking was unfortunately compromised. We are now pacing ahead with a participatory orientation. So, despite our intents, this study is a qualitative study that serves as a basis for further participatory research.
Additional information
Funding
Notes on contributors
Nicole Padley
Nicole Padley graduated from McGill University with a Bachelor of Arts & Science in the Interfaculty Program in Environment, Minor in Social Studies of Medicine. She worked as a research assistant at the Pragmatic Health Ethics Research Unit from where she primarily contributed to the project on the flourishing of youth in the transition from pediatric to adult healthcare systems.
Dina Moubayed
Dr Dina Moubayed completed her medical studies at the Université de Montréal, and went on to pursue adolescent medicine and Pediatrics specialties at the Université de Montréal. She is currently pursuing a Master of Public Health Program at Johns Hopkins University.
Amélie Lanteigne
Amélie Lanteigne was research coordinator for the Pragmatic Health Ethics Research Unit where she mainly worked on participatory research projects on ethics in transitions from pediatric to adult healthcare systems. Amélie has completed a master’s degree in sociology at Université de Montréal.
François Ouimet
François Ouimet worked as a research assistant at the Pragmatic Health Ethics Research Unit where he primarily contributed to various projects on transition from pediatric to adult healthcare systems. He is a graduate student in philosophy at Université de Montréal and currently a research assistant at Canada Research Chair in Music and Politics.
Marie-José Clermont
Dr Marie-José Clermont is a paediatric nephrologist in a large mother and child hospital, CHU Sainte-Justine in Montreal. She is also part of the clinical ethics committee of the hospital and also of the organ transplant OPO of the province of Quebec. Working with solid organ transplant recipients and other chronic care patients, she became interested in transition many years ago. She has founded a renal transplant transition clinic, and she is part of the Transition bureau of the same institution.
Anne Fournier
Dr Anne Fournier is a pediatric cardiologist and researcher at Centre Hospitalier Universitaire Sainte-Justine – Université de Montréal. She is in charge of pediatric patients with pacemakers and defibrillators and consultant for patients with complex arrhythmias. She has also developed expertise in cardiac-related dysfunction associated with neuro-muscular diseases and pediatric pulmonary hypertension. Since 2015, Dr Fournier is the co-director of the Transition bureau for the department of pediatrics of the CHU Sainte-Justine. She has also been involved with the community as a founding member of a pediatric cardiac patients’ foundation in 1984, the Quebec Foundation for Children with Heart Disease (Fondation En Coeur). Since 2022, Dr Fournier is the chair of the Children's Health Care Canada Transition Hub.
Eric Racine
Dr. Eric Racine, PhD, MCAHS is Research Professor at the Institut de recherches cliniques de Montréal (IRCM) and Université de Montréal and also Adjunct Professor at McGill University. He is Director of the Pragmatic Health Ethics Research Unit. Dr. Racine is internationally known for his contributions to the development of novel ethical approaches in health care. He is the author of more than 225 peer reviewed papers and several books. He has served on the Board of the FRQ-S, the CIHR Standing Committee on Ethics, and the International Neuroethics Society.