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); Jan Willem Gorter, MD, PhD (Pediatrics, McMaster University), Eric Racine, PhD (Pragmatic Health Ethics Research Unit, Université de Montréal, McGill University)

Collaborators

Maria Buithieu (Pediatrics, CHU Sainte-Justine)

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); Elie Haddad, MD, PhD (CHU Sainte-Justine, 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

Bogossian, A., Gorter, J., & Racine, E. Ethics in transition programs for young people with neurodevelopmental disabilities: A scoping review, in preparation.

Bogossian, A., Majnemer, A., & Racine, E. Ethics in transition care for young people with neurologic conditions. Seminars in Child Neurology, Transitions Volume, in preparation.

Bogossian, A., & Racine, E. Protocol for a scoping review on ethics in transitions from pediatric to adult healthcare among children and youth with neurodevelopmental disabilities. BMJ Open, under review.

Montreuil, M., Martineau, J. T., & Racine, E. Exploring ethical issues related to patient engagement in health care: Patient, clinician and researcher’s perspectives, in preparation.

Montreuil, M., Bogossian, A., & Racine, E. The ethics of participatory research approaches with children: A realist review, in preparation.

Montreuil, M., Teachman, G., & Carnevale, F. A. Recognizing the voices of all children, including those with ‘cognitive impairments,’ in research. In A. Cascio et Racine, E. (Eds.). Research involving participants with impaired cognition: Ethics, autonomy, inclusion, and innovation. Oxford University Press, in preparation.

Racine, E., Bell, E., Yan, A., Andrew, G., Bell, L. E., Clarke, M., Dubljevic, V., Goldowitz, D., Janvier, A., McLachlan, K., Muhajarine, N., Nicholas, D., Oskoui, M., Rasmussen, C., Rasmussen, L. A., Roberts, W., Shevell, M., Wade, L., & Yager, J. Y. (2014). Ethics challenges of transition from paediatric to adult health care services for young adults with neurodevelopmental disabilities. Paediatrics & Child Health, 19(2), 65-68.

Larivière-Bastien, D., Bell, E., Majnemer, A., Shevell, M., & Racine, E. (2013). Perspectives of young adults with cerebral palsy on transitioning from pediatric to adult healthcare systems. Seminars in Pediatric Neurology, 20(2), 154-159.