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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...

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Detalles Bibliográficos
Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
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
Descripción
Sumario: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.