1 40 2 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource September 2018 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month October 2018 List URL Address <a href="http://doi.org/10.1136/bmjopen-2017-020914" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2017-020914</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities Publisher An entity responsible for making the resource available BMJ Open Date A point or period of time associated with an event in the lifecycle of the resource 2018 Creator An entity primarily responsible for making the resource Bogossian A; Gorter JW; Racine E Description An account of the resource 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. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/bmjopen-2017-020914" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2017-020914</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. 2018 Bmj Open Bogossian A Gorter JW October 2018 List Racine E September 2018 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource September 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month September List 2024 URL Address <a href="http://doi.org/10.1089/jpm.2023.0673" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0673</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Scoping Review on Transitions in the Context of Pediatric Palliative Care Publisher An entity responsible for making the resource available Journal of Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource quality of life; review; adolescent; chronic disease; palliative therapy; health care policy; anxiety; systematic review; human; child; therapy; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; scoping review; clinical observation; environmental change Creator An entity primarily responsible for making the resource Champagne E; Chenard J; Simard C; Bonanno M; Bogossian A; Roberge V; Olivier-D'Avignon M; Ummel D; Fortin G; Bergeron F; Bonenfant F Description An account of the resource Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be bewildering and highly anxiety-inducing. However, clinical observations seem to point to a more heterogenous care offer, including a lack or discontinuity of services, at the expense of their quality of life. Objective: This paper aims to establish a portrait of the existing literature and identify research gaps on the multiple transitions experienced by this population. Design: A scoping review is provided, following a PRISMA protocol. MEDLINE, PubMed and CINAHL were consulted. The search strategy is based on three key concepts: (1) palliative care/complex condition, (2) child/adolescent, and (3) transition. Articles were screened with the help of Covidence. Results: A total of 72 articles are included for analysis. The aimed population is either identified by age group or by medical status. Respondents are most often parents rather than the children themselves. Transitions include: reaching adulthood, changes in care environment, changes in medical status, and school integration. Conclusion: The discussion notices a definitional murkiness about transitions and highlights the fact that the multifaceted and complex nature of transition over time is largely ignored. New research should involve a diversity of participants and include children's voices. Recommendations include clearer concept definitions, health care policies that adopt an ecosystemic approach, and professional training in the systemic family approach in palliative care. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1089/jpm.2023.0673" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0673</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent anxiety Bergeron F Bogossian A Bonanno M Bonenfant F Champagne E Chenard J Child Chronic Disease clinical observation environmental change Fortin G Health Care Policy Human Journal of Palliative Medicine Olivier-D'Avignon M Palliative Therapy Preferred Reporting Items for Systematic Reviews and Meta-Analyses Quality Of Life Review Roberge V Scoping review September List 2024 Simard C Systematic Review Therapy Ummel D