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Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities
  1. Aline Bogossian1,2,
  2. Jan Willem Gorter3,4,
  3. Eric Racine1,5,6
  1. 1 Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal, Montreal, Quebec, Canada
  2. 2 Faculté des études supérieures et postdoctorales (Programme de sciences neurologiques), Université de Montréal, Montréal, Quebec, Canada
  3. 3 Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada
  4. 4 CanChild Centre for Childhood Disability Research, Institute for Applied Health Sciences, McMaster University, Hamilton, Ontario, Canada
  5. 5 Département de médecine et Département de médecine sociale et préventive (Programmes de bioéthique), Université de Montréal, Montreal, Quebec, Canada
  6. 6 Division of Experimental Medicine (Biomedical Ethics Unit), Department of Neurology and Neurosurgery, McGill University, Montréal, Québec, Canada
  1. Correspondence to Dr. Eric Racine; eric.racine{at}ircm.qc.ca

Abstract

Introduction As adolescents with neurodisabilities near adulthood, they and their caregivers will face the challenge of transferring from paediatric to adult healthcare systems. Despite the growing number of programmes designed to support healthcare transitions, little is known about practices that result in positive outcomes or how ethical issues are addressed. The objective of this review is to identify and document the ethical principles that may be embedded in the vision of transitional care programmes and to map ethical issues encountered in transitional care as well as the strategies employed to recognise and address these ethical issues.

Method and analysis We will document hidden and explicit ethical principles and issues from empirical studies on transition programmes for youth with neurodisabilities. An initial framework developed through a content extraction strategy will serve as a point of departure for data analysis and will be iteratively refined through our analytic process and with feedback from our stakeholders, including youth with neurodisabilities and their families. Findings will then be shared in different formats with health and social services professionals, healthcare decision and policymakers.

Dissemination Scoping review results will be shared at key conferences and disseminated in peer-reviewed publications as well as plain language summaries with stakeholders and the general public. Opportunities will be sought to discuss this project and its preliminary findings with partners in the paediatric, adult healthcare and rehabilitation communities comprising young people with neurodisabilities, their families, clinicians, programme managers and researchers.

  • ethics
  • transitional care
  • neurodisability

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Footnotes

  • Contributors Aline Bogossian, Eric Racine and Jan Willem Gorter devised the project, the main conceptual ideas and the design of the protocol. Aline Bogossian and Eric Racine drafted the manuscript and Jan Willem Gorter commented on the manuscript. Aline Bogossian, Eric Racine and Jan Willem Gorter conducted revisions in the manuscript of important intellectual content and approved the version to be published.

  • Funding This work was supported by a postdoctoral award from the Kids Brain Health Network and a Canadian Institutes for Health Research Career Award, both held by ER. JWG holds the Scotiabank Chair in Child Health Research.

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.