Ethics in transitions from pediatric to adult healthcare systems

Research team for project 1

Aline Bogossian, PhD (School of Social Work, Université de Montréal); Marie-José Clermont, MD (Pediatrics CHU Sainte-Justine); Anne Fournier, MD (Pediatrics, CHU Sainte-Justine); Colette Deslandres, MD (Department of Gastroenterology, Université de Montréal, CHU Sainte-Justine); Mathilde Genest (Université de Montréal); Jan Willem Gorter, MD, PhD (Département de pédiatrie, McMaster University); Amélie Lanteigne, MSc (Université de Montréal, Unité de recherche en éthique pragmatique de la santé); Eric Racine, PhD (Pragmatic Health Ethics Research Unit, Université de Montréal, McGill University)

Funding

Canadian Institutes of Health Research (CIHR)

Research team for project 2

Aline Bogossian, PhD (School of Social Work, Université de Montréal); Marjorie Montreuil, Nurse, PhD (Ingram School of Nursing, McGill University); Hugo Chapdelaine, MD (Centre hospitalier universitaire de Montréal); Mathilde Genest (Université de Montréal); Amélie Lanteigne, MSc (Université de Montréal, Pragmatic Health Ethics Research Unit, Université de Montréal); Eric Racine, PhD (Pragmatic Health Ethics Research Unit, Université de Montréal, McGill University)

Funding

IRCM Foundation

Through a series of projects we aim to examine healthcare transitions experience through the perspectives of those who experience them; various patient populations, including youth with chronic illnesses, neurodevelopmental disorders and rare diseases, caregivers and health and social services providers. A participatory action research approach is used to bridge the gap between knowledge development and its application in practice.

Project 1: Participatory research project for an the development of an ethics-informed pediatric to adult transitional care program

As they get older, children with chronic health conditions and neurodisabilities will have to leave familiar pediatric settings to receive services within adult health care systems.  This program of research focuses on the clinical, ethical and psychosocial issues that can occur during these transitions. The aim of this project is to develop an ethics-informed pediatric to adult care program and to evaluate its impact on the global well-being of youth.  We will examine the health care transition experience through the perspectives of those who experience them, their caregivers and their health and social services providers. Guided by the insights of an advisory committee, a participatory action research approach is used to bridge the gap between knowledge development and its application in practice.

 

Project 2: Exploring pediatric to adult transition in the context of primary immunodeficiencies

The Research Unit on Pragmatic Ethics of Health of the Institute of Montreal Clinical Research Center (IRCM), in partnership with the Immunology Clinic of CHU-Ste Justine and the IRCM Primary Immunodeficiency clinic, is conducting a study to improve services for young people with primary immunodeficiency who leave pediatric health services to transfer to services health care for adults. We would like to know more about how services are offered and the impact of the availability of services for young adults and their caregivers. An advisory committee composed of these stakeholders will guide the researchers in this project. Data collection will involve interviews and surveys with the people involved and their families.

Publications

Montreuil Marjorie, Bogossian Aline, Laberge-Perrault Emilie, Racine Eric. The ethics of participatory research approaches with children: a realist review. The Patient – Patient-Centered Outcomes Research. Under review.

Bogossian Aline, Majnemer Annette, Racine Eric. Contextualized autonomy in transitional care for young people with neurologic conditions: The role of the pediatric neurologist. Journal of Child Neurology, 2020; 35(8): 536-542. Pour plus d’informations.

Montreuil Marjorie, Martineau Joé T., Racine Eric. Exploring ethical issues related to patient engagement in healthcare: Patient, clinician and researcher’s perspectives. Journal of Bioethical Inquiry, 2019; 16(2): 237-248. For more information.

Bogossian Aline, Gorter Jan Willem and Racine Eric. Protocol for a scoping review about ethics in transition programs for adolescents and young adults with neurodisabilities. BMJ Open, 2018; 8(8):e020914. For more information.

Racine Eric, Bell Emily, Yan Allison, Andrew Gail, Bell Lorraine, Clarke Margaret, Dubljević Veljko, Goldowitz Dan, Janvier Annie, McLachlan Kaitlyn, Muhajarine Nazeem, Nicholas David, Oskoui Maryam, Rasmussen Carmen, Rasmussen Lisa Anne, Roberts Wendy, Shevell Michael, Wade Lucie, Yager Jerome Y. Ethical challenges of transition from pediatric to adult health care services for young adults with neurodevelopmental disabilities. Paediatrics and Child Health 2014; 19(2), 65-68. For more information.

Larivière-Bastien Danaë, Bell Emily, Majnemer Annette, Shevell Michael, Racine Eric. Perspectives of young adults with CP on transitioning from pediatric to adult healthcare systems. Seminars in Pediatric Neurology 2013; 20(2), 154-159. PMID 23948690. For more information.