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Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s?
In the field of disability research and advocacy, the notion of ‘cures’ is contentious. Cerebral palsy (CP) is no exception. In this narrative review, we combine perspectives gained during community consultation undertaken for the Australian and New Zealand Cerebral Palsy Strategy, 2020 with those p...
Autores principales: | , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9290932/ https://www.ncbi.nlm.nih.gov/pubmed/34402053 http://dx.doi.org/10.1111/dmcn.15016 |
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author | Honan, Ingrid Finch‐Edmondson, Megan Imms, Christine Novak, Iona Hogan, Amy Clough, Shannon Bonyhady, Bruce McIntyre, Sarah Elliott, Catherine Wong, Shirley Bink, Michael Badawi, Nadia |
author_facet | Honan, Ingrid Finch‐Edmondson, Megan Imms, Christine Novak, Iona Hogan, Amy Clough, Shannon Bonyhady, Bruce McIntyre, Sarah Elliott, Catherine Wong, Shirley Bink, Michael Badawi, Nadia |
author_sort | Honan, Ingrid |
collection | PubMed |
description | In the field of disability research and advocacy, the notion of ‘cures’ is contentious. Cerebral palsy (CP) is no exception. In this narrative review, we combine perspectives gained during community consultation undertaken for the Australian and New Zealand Cerebral Palsy Strategy, 2020 with those published in the scientific and grey literature to understand whether ‘cures for CP’ is a reasonable and appropriate goal. We frame these perspectives through the lens of several ethical principles central to the discussion. These include maintaining hope while also being realistic, sensitivity to sharply different viewpoints amongst people with disability and their families, and responding to community priorities, societal attitudes, and identity. Through this exploration of the literature and perspectives, we arrived at a definition of ‘cures for CP’ that is pluralized and focuses on functional improvement and/or symptom reduction whilst still acknowledging the potential for neural repair/regeneration strategies. |
format | Online Article Text |
id | pubmed-9290932 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-92909322022-07-20 Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s? Honan, Ingrid Finch‐Edmondson, Megan Imms, Christine Novak, Iona Hogan, Amy Clough, Shannon Bonyhady, Bruce McIntyre, Sarah Elliott, Catherine Wong, Shirley Bink, Michael Badawi, Nadia Dev Med Child Neurol Reviews In the field of disability research and advocacy, the notion of ‘cures’ is contentious. Cerebral palsy (CP) is no exception. In this narrative review, we combine perspectives gained during community consultation undertaken for the Australian and New Zealand Cerebral Palsy Strategy, 2020 with those published in the scientific and grey literature to understand whether ‘cures for CP’ is a reasonable and appropriate goal. We frame these perspectives through the lens of several ethical principles central to the discussion. These include maintaining hope while also being realistic, sensitivity to sharply different viewpoints amongst people with disability and their families, and responding to community priorities, societal attitudes, and identity. Through this exploration of the literature and perspectives, we arrived at a definition of ‘cures for CP’ that is pluralized and focuses on functional improvement and/or symptom reduction whilst still acknowledging the potential for neural repair/regeneration strategies. John Wiley and Sons Inc. 2021-08-17 2022-01 /pmc/articles/PMC9290932/ /pubmed/34402053 http://dx.doi.org/10.1111/dmcn.15016 Text en © 2021 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press https://creativecommons.org/licenses/by-nc/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes. |
spellingShingle | Reviews Honan, Ingrid Finch‐Edmondson, Megan Imms, Christine Novak, Iona Hogan, Amy Clough, Shannon Bonyhady, Bruce McIntyre, Sarah Elliott, Catherine Wong, Shirley Bink, Michael Badawi, Nadia Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s? |
title | Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s? |
title_full | Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s? |
title_fullStr | Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s? |
title_full_unstemmed | Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s? |
title_short | Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s? |
title_sort | is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s? |
topic | Reviews |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9290932/ https://www.ncbi.nlm.nih.gov/pubmed/34402053 http://dx.doi.org/10.1111/dmcn.15016 |
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