382 XXXI MOSTRA UNISINOS DE INICIAÇÃO CIENTÍFICA E TECNOLÓGICA De 28/10/2024 a 01/11/2024 Unisinos São Leopoldo Referências AHMED, A., FRASER, L. K., KINCHIN, I. et al. The last year of life of children with life-limiting conditions: a cohort study in the UK and Ireland. Arch Dis Child. 103(4), 2018:319-324. ANDRADE, Bianca; AZEVEDO, Marco Antonio. Respeitando biografias até o fim: Uma concepção de personalidade mais adequada ao cuidado centrado na pessoa de indivíduos com transtornos graves da consciência. Ethic@, v. 19, n. 1, p. 105-34, 2020. ANDRADE, Bianca; AZEVEDO, Marco Antonio. Personhood and disorders of consciousness: Finding room in Person-Centered Healthcare. European Journal for Person Centered Healthcare, v. 8, n. 3, p. 391-405, 2020. ARKSEY, H.; O’MALLEY, L. Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology: Theory and Practice, 8(1); 2005: 19–32. https://doi.org/10.1 080/1364557032000119616. BRASIL. Resolução No 466, DE 12 DE DEZEMBRO DE 2012. Conselho Nacional de Saúde, Brasil. 2012, em https://conselho.saude.gov. br/resolucoes/2012/Reso466.pdf. Acesso em 20 de fevereiro de 2023. BURGHES, Arthur, BEATTIE, Christine. Spinal muscular atrophy: Why do low levels of survival motor neuron protein make motor neurons sick. Nat Rev Neurosci 10, 2009, p. 597–609. CHRUN, L. R., ROSSATO CHRUN COSTA, L., DA SILVA MIRANDA, G., & MONTEIRO ALMEIDA, F. Atrofia muscular espinhal tipo I: Aspectos clínicos e fisiopatológicos. Revista de Medicina, 96(4), 2017: 281-286. DALL’AGNOL, Darlei. Care and respect in bioethics. Newcastle upon Tyne, UK: Cambridge Scholars Publishing, 2016. DeGRAZIA, David. Human Identity and Bioethics. Cambridge, UK: Cambridge University Press, 2005. DARRAS, B. T., CHIRIBOGA, C. A., IANNACCONE, S. T., et al. Nusinersen in Infants Initiated on Noninvasive Ventilation: Safety and Preliminary Efficacy. Pediatr Neurol. 100, 2019:59-66. ENTWISTLE, Vikki A.; WATT, Ian S. A capabilities approach to person-centered care: response to open peer commentaries on treating patients as persons. The American Journal of Bioethics, v. 13, n.8, p. 29–39. 2013.
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