Esclerose Lateral Amiotrófica na Argentina: uma abordagem das realidades das pessoas com ELA e seus ambientes de atendimento no ano de 2023
DOI:
https://doi.org/10.18041/1900-3803/entramado.2.11557Palavras-chave:
Cuidadores, Pessoas com Esclerose Lateral Amiotrófica, Pesquisa, Trabalho de assistência, Doenças raras, Cobertura de saúde, Síndrome do cuidador exaustoResumo
Introdução. O objetivo deste artigo é explorar e analisar as experiências e realidades cotidianas do universo de pessoas diagnosticadas com Esclerose Lateral Amiotrófica (ELA) e seus ambientes de atendimento na Argentina em 2023. Metodologia. São apresentados os resultados de uma pesquisa on-line autoadministrada realizada nos meses de maio a julho de 2023 com pessoas com ELA e cuidadores primários. O estudo envolveu 111 participantes: 56 pessoas diagnosticadas com ELA e 55 cuidadores primários. Resultados e discussão. 71,7% das pessoas diagnosticadas com ELA pesquisadas consideraram que sua renda familiar era insuficiente para cobrir suas despesas. A obtenção do diagnóstico correto leva, na maioria dos casos, mais de um ano. Os cuidadores primários pesquisados têm cargas de trabalho pesadas de cuidados que, na maioria dos casos, excedem 8 horas por dia. Além disso, eles apresentam níveis mais altos de exaustão, desânimo, nervosismo e desconforto do que as pessoas com ELA que participaram do estudo. Aqueles que assumem o papel de cuidadores primários são, em sua maioria, mulheres, o que é consistente com as evidências do campo de cuidados que apontam para a estreita relação entre gênero e cuidados. Está claro que as pessoas com ELA e seus cuidadores estão em uma situação muito difícil, tanto financeiramente quanto em termos de saúde física e emocional. Conclusões. Com base nos resultados do estudo, é oferecido um conjunto de considerações e recomendações para informar a elaboração de políticas e ações destinadas a melhorar a situação das pessoas com ELA e daquelas que assumem o papel de cuidadores primários. O estudo também identifica possíveis linhas de pesquisa futuras que poderiam ampliar e aprofundar os resultados aqui apresentados.
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Referências
ANDO, Hikari; COUSINS, Rosanna; YOUNG, Carolyn A. Exploring and addressing ‘concerns’ for significant others to extend the understanding of quality of life with amyotrophic lateral sclerosis: a qualitative study. In: Journal of central nervous system disease. 2019. vol. 11. https://doi.org/10.1177/1179573519859360
AOUN, Samar M., BENTLEY, Brena; FUNK, Laura, TOYE, Chris; GRANDE, Gunn; STAJDUHAR, Kelli J. A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions. In: Palliative medicine. 2013. vol. 27, no 5. p. 437-446. https://doi.org/10.1177/0269216312455729
BALLESTER, Pedro Olmedo; GARCÍA BERENGUER, Nieves María; LLORET IRLES, Daniel. Necesidades psicosociales en cuidados paliativos de las personas con esclerosis lateral amiotrófica, familiares y cuidadores/as. Una revisión de revisiones. En: Medicina paliativa. 2022. vol. 29, no 3. p. 201-210. https://doi.org/10.20986/medpal.2022.1283/2021
BERGIN, Susan; MOCKFORD, Carole. Recommendations to support informal carers of people living with motor neurone disease. In: British journal of community nursing. 2016. vol. 21, no 10. p. 518-524. https://doi.org/10.12968/bjcn.2016.21.10.518
BETTINI, Mariela; GARGIULO-MONACHELLI, Gisella M.; RODRÍGUEZ Gabriel; REY, Raul C.; MARTINEZ PERALTA, Liliana; SICA, Roberto E.P. Epidemiology of amyotrophic lateral sclerosis patients in a centre in Buenos Aires. En: Arquivos de neuro-psiquiatria. 2011. vol. 69. p. 867-870. https://doi.org/10.1590/S0004-282X2011000700003
BESWICK, Emily; PARK, Emily; WONG, Charis; MEHTA, Arpan R; DAKIN, Rachel; CHANDRAN, Siddharthan; NEWTON, Judith; CARSON, Alan; ABRAHAMS, Sharon & PAL, Suvankar. A systematic review of neuropsychiatric and cognitive assessments used in clinical trials for amyotrophic lateral sclerosis. In: Journal of neurology, 2021. vol. 268, p. 4510-4521. https://doi.org/10.1007/s00415-020-10203-z
BUSTOS DEDE, Julieth, et al. Etiología de la Esclerosis Lateral Amiotrófica (ELA). Trabajo de Investigación del Programa de Enfermería, Universidad Simón Bolívar, 2021. https://bonga.unisimon.edu.co/items/042b7a1c-569d-41c6-bba3-61b437a71472
CAMACHO, Ana; ESTEBAN, Jesús; PARADAS, Carmen. Informe de impacto social de la ELA y las enfermedades neuromusculares. Fundación Española de Enfermedades Neurológicas. 2014. 39 p. http://www.fundaciondelcerebro.com/docs/INFORME_ELA.pdf
CHIÒ, Adriano, et al. Cognitive impairment across ALS clinical stages in a population-based cohort. In: Neurology. 2019. vol. 93, no 10. p. e984-e994. https://doi.org/10.1212/WNL.0000000000008063
CHIÒ, Adriano; GAUTHIER, A.; MONTUSCHI, A.; CALVO, A.; DI VITO, N.; GHIGLIONE, P.; MUTANI, R. A cross sectional study on determinants of quality of life in ALS. In: Journal of Neurology, Neurosurgery & Psychiatry, 2004. vol. 75, no 11. p. 1597-1601. https://doi.org/10.1136/jnnp.2003.033100
CIPOLLETTA, Sabrina; AMICUCCI, Linda. The family experience of living with a person with amyotrophic lateral sclerosis: a qualitative study. In: International Journal of Psychology. 2015. vol. 50, no 4. p. 288-294. https://doi.org/10.1002/ijop.12085
CUPP, Julia; SIMMONS, Zachary; BERG, Arthur; FELGOISE, Stephanie. H.; WALSH, Susan M.; STEPHENS, Helen E. Psychological health in patients with ALS is maintained as physical function declines. In: Amyotrophic Lateral Sclerosis. 2011. vol. 12, no 4, p. 290-296. https://doi.org/10.3109/17482968.2011.554555
DE MARCHI, Fabiola; SARNELLI, Maria Francesca; SOLARA, Valentina; BERSANO, Enrica; CANTELLO, Roberto; MAZZINI, Letizia. Depression and risk of cognitive dysfunctions in amyotrophic lateral sclerosis. En: Acta Neurologica Scandinavica. 2019. vol. 139, no 5. p. 438-445. https://doi.org/10.1111/ane.13073
DE WIT, Jessica; BAKKER, Leonard A., VAN GROENESTIJN, Annerieke C., VAN DEN BERG, Leonard H., SCHRÖDER, Carin D., VISSER-MEILY, Johanna. M.; BEELEN, Anita. Caregiver burden in amyotrophic lateral sclerosis: a systematic review. In: Palliative medicine. 2018. vol. 32, no 1. p. 231-245. https://doi.org/10.1177/0269216317709
DUMANCELA MINA, Gabriela. Investigación nacional sobre esclerosis lateral amiotrófica Tesis de Licenciatura. Quito: Universidad San Francisco de Quito, 2012. https://repositorio.usfq.edu.ec/bitstream/23000/5467/1/123728.pdf
DUTTA, Kallol; THAMMISETTY, Sai Sampath; BOUTEJ, Hejer; BAREIL, Christine; JULIEN, Jean Pierre. Mitigation of ALS pathology by neuron-specific inhibition of nuclear factor kappa B signaling. In: Journal of Neuroscience. 2020. vol. 40, no 26. p. 5137-5154. https://doi.org/10.1523/JNEUROSCI.0536-20.2020
FUNDACIÓN ESTEBAN BULLRICH. Informe Final: Estado de Situación de la Esclerosis Lateral Amiotrófica en América Latina y el Caribe, 2021. https://fundacionestebanbullrich.org/assets/informes/informe_final_ela.pdf
GALVIN, Miriam; CARNEY, Sile; CORR, Bernie; MAYS, Lain; PENDER, Niall; HARDIMAN, Orla. Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis. In: BMJ open, 2018. vol. 8, no 1. p. e018721. https://doi.org/10.1136/bmjopen-2017-018721
GANZINI, Linda; JOHNSTON, Wendy S.; HOFFMAN, William F. Correlates of suffering in amyotrophic lateral sclerosis. In: Neurology. 1999. vol. 52, no 7, p. 1434-1434. https://doi.org/10.1212/WNL.52.7.1434
GAUTHIER, A.; VIGNOLA, A.; CALVO, A.; CAVALLO, E.; MOGLIA, C.; SELLITTI, L.; CHIO, A. A longitudinal study on quality of life and depression in ALS patient–caregiver couples. In: Neurology. 2007. vol. 68, no 12, p. 923-926. https://doi.org/10.1212/01.wnl.0000257093.53430.a8
GNAVI, Anahí Gisel. Cuidado de pacientes con ELA en La Pampa, entorno profesional y socio afectivo. Universidad Nacional de La Pampa, Tesis, 2020. https://repo.unlpam.edu.ar/handle/unlpam/7945
GOLDSTEIN, L. H.; ATKINS, L.; LEIGH, P. N. Correlates of quality of life in people with motor neuron disease (MND). In: Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders. 2002. vol. 3, no 3. p. 123-129. https://doi.org/10.1080/146608202760834120
GÓMEZ, Silvia Solera; BALLESTER, María Cuerda; CANTUS, David Sancho. Impacto de la Esclerosis Lateral Amiotrófica (ELA) en el cuidador principal. En: Enfermería integral: Revista científica del Colegio Oficial de Enfermería de Valencia. 2020. no 126, p. 61-65. https://dialnet.unirioja.es/servlet/articulo?codigo=8431077
HEIDARI, Mohammad Eghbal; NADALI, Javad; PAROUHAN, Ali; AZARAFRAZ, Mahdi; IRVANI, Seyed Sina Naghibi, y GHAREBAGHI, Alireza. Prevalence of depression among amyotrophic lateral sclerosis (ALS) patients: A systematic review and meta-analysis. In: Journal of affective disorders. 2021. vol. 287. p. 182-190. https://doi.org/10.1016/j.jad.2021.03.015
ILSE, Benjamin; PRELL, Tino; WALTHER, Mario; HARTUNG, Viktor et al. Relationships between disease severity, social support and health-related quality of life in patients with amyotrophic lateral sclerosis. In: Social Indicators Research. 2015. vol. 120. p. 871-882. https://doi.org/10.1007/s11205-014-0621-y
IWASAKI, Yasuo; IKEDA, Ken; KINOSHITA, Masao. The diagnostic pathway in amyotrophic lateral sclerosis. In: Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders. 2001. vol. 2, no 3. p. 123-126. https://doi.org/10.1080/146608201753275571
LO COCO, Gianluca; LO COCO, Daniele; CICERO, Viviana; OLIVERI, Antonino; LO VERSO, Girolamo; PICCOLI, Federico; LA BELLA, Vincenzo. Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers. In: Journal of the Neurological Sciences. 2005. vol. 238. p. 11-17. https://doi.org/10.1016/j.jns.2005.05.018
MATUZ, Tamara; BIRBAUMER, Niels; HAUTZINGER, Martin; KÜBLER, Andrea. Coping with amyotrophic lateral sclerosis: an integrative view. In: Journal of Neurology, Neurosurgery & Psychiatry. 2010. vol. 81, no 8. p. 893-898. https://doi.org/10.1136/jnnp.2009.201285
MARTÍNEZ-CAMPO, Yolanda; HOMEDES, Christian; LAZARO, Ana; ALARCÓN, Raquel; CAMPO, David; RIERA, Mariona; DOMÍNGUEZ, Raúl; POVEDANO, Mónica; CASASNOVAS, Carlos. Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity. In: BMC palliative care. 2017. vol. 16, p. 1-7. https://doi.org/10.1186/s12904-017-0260-6
MARTÍNEZ PIZARRO, Sandra. Síndrome del cuidador quemado. En: Revista clínica de medicina de familia. 2020. vol. 13, no 1. p. 97-100. https://dialnet.unirioja.es/servlet/articulo?codigo=8868181
MCLEOD, Janet E.; CLARKE, David M. A review of psychosocial aspects of motor neurone disease. In: Journal of the neurological sciences. 2007. vol. 258, no 1-2. p. 4-10. https://doi.org/10.1016/j.jns.2007.03.001
NACIONES UNIDAS. Convención Internacional sobre los Derechos de las Personas con Discapacidad. Resolución 61/106, 13 de diciembre de 2006, Nueva York. https://www.un.org/esa/socdev/enable/documents/tccconvs.pdf
NEUDERT, Christian; WASNER, Maria; BORASIO, Gian Domenico. Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis. In: Journal of palliative medicine. 2004. vol. 7, no 4, p. 551-557. https://doi.org/10.1089/jpm.2004.7.551
OLSSON OZANNE, Anneli G.; STRANG, Susann; PERSSON, Lennart I. Quality of life, anxiety and depression in ALS patients and their next of kin. In: Journal of clinical nursing. 2011. vol. 20, no 1‐2, p. 283-291. https://doi.org/10.1111/j.1365-2702.2010.03509.x
PAGANONI, Sabrina; MCDONNELL, Erin; SCHOENFELD, David; YU, Hong; DENG, Jing; ATASSI, Hamza; SHERMAN, Alexander; YERRAMILLI-RAO, Padmaja; CUDKOWICZ, Merit and ATASSI, Nazem. Functional decline is associated with hopelessness in amyotrophic lateral sclerosis (ALS). In: Journal of neurology & neurophysiology. 2017. vol. 8, no 2. https://doi.org/10.4172/2155-9562.1000423
PAGNINI, Francesco. Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: a review. In: International Journal of Psychology. 2013. vol. 48, no 3. p. 194-205. https://doi.org/10.1080/00207594.2012.691977
PAGNINI, Francesco; ROSSI, Gabriella; LUNETTA, Christian; BANFI, Paolo; CASTELNUOVO, Gianluca; CORBO, Massimo; MOLINARI, Enrico. Burden, depression, and anxiety. In: Psychology, Health & Medicine. 2010. vol. 15, no 6. p. 685-693. https://doi.org/10.1080/13548506.2010.507773
PAZ-RODRÍGUEZ, F.; ANDRADE-PALOS, P.; LLANOS-DEL PILAR, A. M. Consecuencias emocionales del cuidado del paciente con esclerosis lateral amiotrófica. In: Rev Neurol. 2005. vol. 40, no 8. p. 459-64. https://doi.org/10.33588/rn.4008.2004376
PERDOMO-ROMERO, Alix Yaneth; RAMÍREZ-PERDOMO, Claudia Andrea. Percepción de calidad de vida en cuidadores de pacientes con demencia. En: Revista Científica de la Sociedad Española de Enfermería Neurológica. 2017. vol. 46. p. 26-31. https://www.sciencedirect.com/science/article/abs/pii/S2013524617300156
PÉREZ AKLY, Manuel; SCHIAVA, Marianela; MELCOM, Mario; RODRÍGUEZ, Gabriel; GARGIULO, Gisella; BETTINI, Mariela; FULGENZI, Ernesto, et al. Estudio epidemiológico multicéntrico sobre esclerosis lateral amiotrófica en la Ciudad de Buenos Aires. En: Neurología Argentina. Oct – dic, 2017. vol. 9, no. 4, p. 225-230. https://doi.org/10.1016/j.neuarg.2017.07.004
PINHO, Ana Catarina; GONÇALVES, Edna. Are amyotrophic lateral sclerosis caregivers at higher risk for health problems? En: Acta Médica Portuguesa, 2016, vol. 29, no 1, p. 56-62. https://doi.org/10.20344/amp.6590
PRADO, Laura de Godoy Rousseff; BICALHO, I. C. S., VIDIGAL-LOPES, M., PRADO, V. D. G. R., GOMEZ, R. S., SOUZA, L. C. D., & TEIXEIRA, A. L. Depression and anxiety in a case series of amyotrophic lateral sclerosis: frequency and association with clinical features. In: Einstein (Sao Paulo). 2017. vol. 15, no 1. p. 58-60. https://doi.org/10.1590/S1679-45082017AO3870
RABKIN, Judith G.; ALBERT, Steven M.; ROWLAND, Lewis P.; MITSUMOTO, Hiroshi. How common is depression among ALS caregivers? A longitudinal study. In: Amyotrophic Lateral Sclerosis. 2009. vol. 10, no 5-6, p. 448-455. https://doi.org/10.3109/17482960802459889
RICHARDS, Danielle; MORREN, John A.; PIORO, Erik P. Time to diagnosis and factors affecting diagnostic delay in amyotrophic lateral sclerosis. In: Journal of the Neurological Sciences. 2020. vol. 417, p. 117054. https://doi.org/10.1016/j.jns.2020.117054
SÁNCHEZ-LÓPEZ, C. R.; PERESTELO-PÉREZ, L.; RAMOS-PÉREZ, C.; LÓPEZ-BASTIDA, J.; SERRANO-AGUILAR, P. Health-related quality of life in patients with amyotrophic lateral sclerosis. In: Neurología (English Edition), 2014, vol. 29, no 1, p. 27-35. https://doi.org/10.1016/j.nrl.2013.02.008
SMITH, Patricia Sherwood; CROSSLEY, Beverly; GREENBERG, Julie, WILDER, Carey; CARROLL, Barbara. Agreement among three quality of life measures in patients with ALS. In: Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders. 2000. vol. 1, no 4. p. 269-275. https://doi.org/10.1080/14660820050515098
UNGLIK, Johanna; BUNGENER, Catherine; DELGADILLO, Daniel; SALACHAS, François; PRADAT, Pierre François; BRUNETEAU, Gaëlle; LENGLET, Timothée; LE FORESTIER, Nadine; COURATIER, Philippe; VACHER, Yannick; LACOMBLEZ, Lucette. Émotions ressenties chez des patients atteints de sclérose latérale amyotrophique. In: Gériatrie et Psychologie Neuropsychiatrie du Vieillissement. 2018. vol. 16, no 4. https://santepsy.ascodocpsy.org/index.php?lvl=notice_display&id=354030
VÁZQUEZ-COSTA, J. F; MARTÍNEZ-MOLINA, M.; FERNÁNDEZ-POLO, M.; FORNÉS-FERRER, V.; FRASQUET-CARRERA, M.; SEVILLA-MANTECÓN, T. Análisis del trayecto y retraso diagnóstico de los pacientes con esclerosis lateral amiotrófica en la Comunidad Valenciana. Neurología, 2021, vol. 36, no 7, p. 504-513. https://doi.org/10.1016/j.nrl.2018.03.026
WICKS, P.; ABRAHAMS, S.: MASI, D.; HEJDA‐FORDE S.; LEIGH, P. N. & GOLDSTEIN, L. H. Prevalence of depression in a 12‐month consecutive sample of patients with ALS. In: European journal of neurology. 2007. vol. 14, no 9, p. 993-1001. https://doi.org/10.1111/j.1468-1331.2007.01843.x
ZIBECCHI, Carla. ¿Cómo se cuida en Argentina?: Definiciones y experiencias sobre el cuidado de niños y niñas. Equipo Latinoamericano de Justicia y Género (ELA), 2014. https://ela.org.ar/wp-content/uploads/2023/07/2014-Como-se-cuida-en-Argentina.pdf
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