An open exploration around end-of-life journeys for children facing terminal illness/severe disability
Date
2023
Authors
Ellison, C.
Chapman Van Duivenbode, C.
Buchanan, F.
Moulding, N.
Editors
Beckett, A.
Calllus, A.-M.
Calllus, A.-M.
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Book chapter
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Source details - Title: The Routledge International Handbook of Children's Rights and Disability, 2023 / Beckett, A., Calllus, A.-M. (ed./s), Ch.26, pp.465-480
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Abstract
The social context around a child’s end of life (EOL) impacts on their experiences of dying as well as the experience of those around them. Children living with disability are often excluded from discussion, and not enough is known about end of life for children living with a disability. This chapter explores how person-centred approaches to health and social supports at EOL focus on the wishes of the child around managing their illness and the dying process. Also, how supports need to advocate for a child’s right to be informed using communication approaches that are developmentally appropriate and accessible to the child.
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Copyright 2023 selection and editorial matter, Angharad E. Beckett and Anne-Marie Callus; individual chapters, the contributors