Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities

Title

Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities

Creator

Bogossian A; Gorter JW; Racine E

Publisher

BMJ Open

Date

2018

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.

Citation List Month

October 2018 List

Issue

8

Volume

8

Collection

Citation

Bogossian A; Gorter JW; Racine E, “Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities,” Pediatric Palliative Care Library, accessed September 17, 2021, https://pedpalascnetlibrary.omeka.net/items/show/15586.

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