O cuidado de enfermagem ao portador de Esclerose Lateral Amiotrófica: uma revisão integrativa
DOI:
https://doi.org/10.33233/eb.v17i6.2099Resumo
Objetivo:Conhecer a produção referente ao cuidado de enfermagem ao portadorÂ
Objetivo: Conhecer a produção referente ao cuidado de enfermagem ao portador de Esclerose Lateral Amiotrófica. Métodos: Trata-se de uma revisão integrativa nas bases de dados Pubmed, Medline, Lilacs, Scielo e BDEnf. Os critérios de inclusão foram: periódicos indexados com textos disponíveis na íntegra, nos idiomas: português, inglês, espanhol, publicados no período de 2006 a 2016, e que apresentaram informações relevantes a questão norteadora da pesquisa. Foram excluídos estudo de revisão integrativa, revisão de literatura, e teses ou dissertações. Resultados: Os principais conteúdos que emergiram da amostra final (n=20) foram: atribuições da enfermagem, manejo de sintomas específicos, modelos de cuidado, dificuldades no cuidado, questões éticas, necessidades existenciais e estratégias de enfrentamento e suporte familiar. Conclusão: A análise revelou que a enfermagem é primordial no tratamento desse paciente e precisa investir em pesquisas que abranjam o envolvimento dos familiares, os sentimentos do paciente e formas de comunicação.
Palavras-chave: enfermagem, esclerose amiotrófica lateral, assistência.
Referências
Galvin M, Corr B, Madden C, Mays I, McQuillan R, Timonen V et al. Caregiving in ALS - a mixed methods approach to the study of Burden. BMC Palliat Care 2016;15(1):81. https://doi.org/10.1186/s12904-016-0153-0
Galvin M, Gaffney R, Corr B, Mays I, Hardiman O. From first symptoms to diagnosis of amyotrophic lateral sclerosis: perspectives of an Irish informal caregiver cohort—a thematic analysis. BMJ Open 2017;7(3):1-8. https://doi.org/10.1136/bmjopen-2016-014985
McDermott CJ, Shaw PJ. Diagnosis and management of motor neurone disease. BMJ 2008;336(7645):658-24. https://doi.org/10.1136/bmj.39493.511759.BE
Chiò A, Logroscino G, Traynor BJ, Collins J, Simeone JC, Goldstein LA et al. Global epidemiology of amyotrophic lateral sclerosis: a systematic review of the published literature. Neuroepidemiology 2013;41(2):118-30. https://doi.org/10.1159/000351153
Palermo S, Lima FJMS, Alvarenga RP. Epidemiologia da Esclerose Lateral Amiotrófica - Europa/América do Norte/América do Sul/Ãsia. Discrepâncias e similaridades. Revisão sistemática da literatura. Rev Bras Neurol 2009;45(2):5-10.
Mathis S, Couratier P, Julian, A, Corcia, P, Le Masson, G. Current view and perspectives in amyotrophic lateral sclerosis. Neural Regen Res 2017;12(2):181-4. https://doi.org/10.4103/1673-5374.200794
Van den Berg JP, Kalmijn S, Lindeman E, Veldink JH, de Visser M, Van der Graaff MM et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 2005;65(8):1264-7. https://doi.org/10.1212/01.wnl.0000180717.29273.12
Connolly S, Galvin M, Hardiman O. End-of-life management in patients with amyotrophic lateral sclerosis. The Lancet Neurology 2015;14(4):435-42. https://doi.org/10.1016/s1474-4422(14)70221-2
Valente SM, Karp JR. Life with Lou Gehrig's disease: managing ALS symptoms. Nurse Pract 2007;32(12):26-33.
Roman AR, Friedlander MR. Revisão integrativa de pesquisa aplicada à enfermagem. Cogitare Enferm 1998;3(2):109-12.
Mendes KDS, Silveira RCCP, Galvão CM. Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto Contexto Enferm 2008; 17(4):758-64. https://doi.org/10.1590/s0104-07072008000400018
Robinson-Smith G, Grill JD. Recognizing involuntary emotional expression disorder. J Neurosci Nurs 2007;39(4):202-7. https://doi.org/10.1097/01376517-200708000-00003
Vitale A, Genge A. Codman Award 2006: the experience of hope in ALS patients. Axone 2007; 28(2):27-35.
Hoffman JJ. Toward a better understanding of amyotrophic lateral sclerosis. Home Healthcare Nurse 2008;26(6):337-42. https://doi.org/10.1097/01.NHH.0000324305.71459.81
Peretti-Watel P, Bendiane MK, Galinier A, Favre R, Ribiere C, Lapiana JM et al. District nurses' attitudes toward patient consent: the case of mechanical ventilation on amyotrophic lateral sclerosis patients: results from a French national survey. J Crit Care 2008;23(3):332-8. https://doi.org/10.1016/j.jcrc.2007.11.007
Mayadev AS, Weiss MD, Distad BJ, Krivickas LS, Carter GT. The amyotrophic lateral sclerosis center: a model of multidisciplinary management. Phys Med Rehabil Clin N Am 2008;19(3):619-31. https://doi.org/10.1016/j.pmr.2008.04.004
King SJ, Duke MM, O'Connor BA. Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): decision-making about 'ongoing change and adaptation'. J Clin Nurs 2009;18(5):745-54. https://doi.org/10.1111/j.1365-2702.2008.02671.x
Hirano Y, Yamazaki Y. Ethical issues in invasive mechanical ventilation for amyotrophic lateral sclerosis. Nurs Ethics 2010;17(1):51-63. https://doi.org/10.1177/0969733009350945
Olsson Ozanne AG, Strang S, Persson LI. Quality of life, anxiety and depression in ALS patients and their next of kin. J Clin Nurs 2011;20(1-2):283-91. https://doi.org/10.1111/j.1365-2702.2010.03509.x
Davis M, Lou JS. Management of amyotrophic lateral sclerosis (ALS) by the family nurse practitioner: a timeline for anticipated referrals. J Am Acad Nurse Pract 2011;23(9):464-72.
Clarke K, Levine T. Clinical recognition and management of amyotrophic lateral sclerosis: the nurse's role. J Neurosci Nurs 2011;43(4):205-14. https://doi.org/10.1097/JNN.0b013e3182212a6c
Penrod J, Hupcey JE, Baney BL, Loeb SJ. End-of-life caregiving trajectories. Clin Nurs Res 2011;20(1):7-24. https://doi.org/10.1177/1054773810384852
Ushikubo M, Okamoto K. Circumstances surrounding death and nursing difficulties with end-of-life care for individuals with ALS in central Japan. Int J Palliat Nurs 2012;18(11):554-60. https://doi.org/10.12968/ijpn.2012.18.11.554
Vitacca M, Comini L, Assoni G, Fiorenza D, Gilè S, Bernocchi P et al. Tele-assistance in patients with amyotrophic lateral sclerosis: long term activity and costs. Disabil Rehabil Assist Technol 2012;7(6):494-500. https://doi.org/10.3109/17483107.2011.652999
Güell MR, Antón A, Rojas-GarcÃa R, Puy C, Pradas J. Comprehensive care of amyotrophic lateral sclerosis patients: a care model. Arch Bronconeumol 2013;49(12):529-33. https://doi.org/10.1016/j.arbr.2013.09.011
Ozanne AO, Graneheim UH, Strang S. Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients. J Clin Nurs 2013;22(15-16):2141-9. https://doi.org/10.1111/jocn.12071
Larsson BJ, Nordin K, Askmark H, Nygren I. Coping strategies among patients with newly diagnosed amyotrophic lateral sclerosis. J Clin Nurs 2014;23(21-22):3148-55. https://doi.org/10.1111/jocn.12557
Bittencourt JFV, Cordeiro ALPC. Esclerose lateral amiotrófica: o processo de cuidar em enfermagem e as tecnologias em saúde. CuidArte enfermagem 2015;9(2):172-7.
Bellomo TL, Cichminski L. Amyotrophic lateral sclerosis: what nurses need to know. Nursing 2015;45(10):46-51. https://doi.org/10.1097/nhh.0000000000000532
Ushikubo M. Comparison between home and hospital as the place of death for individuals with amyotrophic lateral sclerosis in the last stages of illness. Am J Hosp Palliat Care 2015;32(4):417-26. https://doi.org/10.1177/1049909114525259