Educação de pacientes com esclerodermia sistêmica: relato de cartilha
DOI:
https://doi.org/10.11606/issn.2317-0190.v28i2a181801Palavras-chave:
Escleroderma Sistêmico, Terapia Ocupacional, Autocuidado, Materiais Educativos e de Divulgação, Educação de Pacientes como AssuntoResumo
Objetivo: Este estudo visou descrever o desenvolvimento e distribuição online de uma cartilha educativa para pacientes com esclerodermia sistêmica com foco em orientações da terapia ocupacional. Métodos: A metodologia de pesquisa-ação foi aplicada e dividida em cinco etapas: análise das solicitações dos pacientes, elaboração do conteúdo, escolha das ilustrações e do projeto gráfico, aprovação dos autores da cartilha educativa e distribuição online. Resultados: Foi desenvolvida a cartilha educativa intitulada "Orientações da Terapia Ocupacional para Pessoas com Esclerose Sistêmica" e sua distribuição online atingiu quase 5.000 pessoas. Conclusão: Os materiais educativos constituem recurso útil no tratamento de doenças crônicas, como a esclerodermia sistêmica. A distribuição online desses materiais expande seu alcance entre os pacientes.
Downloads
Referências
Sampaio-Barros P, Kayser C, Souza EJR, Marques Neto JF. Esclerose sistêmica. In: Carvalho MAP, Lanna CCD, Bertolo MB, Ferreira G. Reumatologia: diagnóstico e tratamento. 5 ed. Rio de Janeiro: Guanabara Koogan; 2019. p.439-51.
Allanore Y, Simms R, Distler O, Trojanowska M, Pope J, Denton CP, Varga J. Systemic sclerosis. Nat Rev Dis Primers. 2015;1:15002. Doi: https://doi.org/10.1038/nrdp.2015.2
Toebe BL, Boros CL, Skare TL. Desempenho funcional das mãos em pacientes com esclerodermia sistêmica e sua associação com sintomas e perfil de autoanticorpos. Rev Med Res. 2011;13(1):1-7.
Young A, Namas R, Dodge C, Khanna D. Hand impairment in systemic sclerosis: various manifestations and currently available treatment. Curr Treatm Opt Rheumatol. 2016;2(3):252-69. Doi: https://doi.org/10.1007/s40674-016-0052-9
Murphy SL, Barber MW, Homer K, Dodge C, Cutter GR, Khanna D. Occupational Therapy treatment to improve upper extremity function in individuals with early systemic sclerosis: a pilot study. Arthritis Care Res (Hoboken). 2018;70(11):1653-60. Doi: https://doi.org/10.1002/acr.23522
Poole JL. Musculoskeletal rehabilitation in the person with scleroderma. Curr Opin Rheumatol. 2010;22(2):205-12. Doi: https://doi.org/10.1097/BOR.0b013e328335a7d2
Berardinelli LMM, Guedes NAC, Ramos JP, Silva MGN. Tecnologia educacional como estratégia de empoderamento de pessoas com enfermidades crônicas. Rev Enferm UERJ. 2015;22(5):603-9. Doi: https://doi.org/10.12957/reuerj.2014.15509
Bandura A. Self-efficacy: the exercise of control. New York: W H Freeman; 1997.
Barlow JH, Williams B, Wright CC. Patient education for people with arthritis in rural communities: the UK experience. Patient Educ Couns. 2001;44(3):205-14. Doi: https://doi.org/10.1016/s0738-3991(00)00196-8.
Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M. Effect of a self-management program on patients with chronic disease. Eff Clin Pract. 2001;4(6):256-62.
Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1-7. Doi: https://doi.org/10.1207/S15324796ABM2601_01
Alantar A, Cabane J, Hachulla E, Princ G, Ginisty D, Hassin M, et al. Recommendations for the care of oral involvement in patients with systemic sclerosis. Arthritis Care Res (Hoboken). 2011;63(8):1126-33. Doi: https://doi.org/10.1002/acr.20480
Mouthon L, Mestre-Stanislas C, Bérezné A, Rannou F, Guilpain P, Revel M, et al. Impact of digital ulcers on disability and health-related quality of life in systemic sclerosis. Ann Rheum Dis. 2010;69(1):214-7. Doi: https://doi.org/10.1136/ard.2008.094193
Giuggioli D, Manfredi A, Colaci M, Lumetti F, Ferri C. Scleroderma digital ulcers complicated by infection with fecal pathogens. Arthritis Care Res (Hoboken). 2012;64(2):295-7. Doi: https://doi.org/10.1002/acr.20673
Alcacer-Pitarch B, Buch MH, Gray J, Denton CP, Herrick A, Navarro-Coy N, et al. Pressure and pain in systemic sclerosis/scleroderma: an evaluation of a simple intervention (PISCES): randomised controlled trial protocol. BMC Musculoskelet Disord. 2012;13:11. Doi: https://doi.org/10.1186/1471-2474-13-11
Schouffoer AA, Zirkzee EJ, Henquet SM, Caljouw MA, Steup-Beekman GM, van Laar JM, et al. Needs and preferences regarding health care delivery as perceived by patients with systemic sclerosis. Clin Rheumatol. 2011;30(6):815-24. Doi: https://doi.org/10.1007/s10067-010-1645-6
Sierakowska M, Sierakowski S, Sierakowska J, Krajewska-Kułak E, Ndosi M. Pain, fatigue and functional disability are associated with higher educational needs in systemic sclerosis: a cross-sectional study. Rheumatol Int. 2018;38(8):1471-1478. Doi: https://doi.org/10.1007/s00296-018-3998-0
Bastos BG, Ferrari D. Internet e educação ao paciente. Arq Int Otorrinolaringol. 2001;15(4):515-22. Doi: https://doi.org/10.1590/S1809-48722011000400017
WHO Working Group. Therapeutic patient education: continuing education programmes for health care providers in the field of prevention of chronic diseases. Geneve: World Health Organization; 1998.
Sociedade Brasileira de Reumatologia. Esclerose sistêmica: cartilha para pacientes [texto na Internet]. São Paulo: SBR; c2021 [citado 2021 Fev 7]. Disponível em: https://www.reumatologia.org.br/download/esclerose-sistemica/
Devgire V, Martin AF, McKenzie L, Sandler RD, Hughes M. A systematic review of internet-based information for individuals with Raynaud's phenomenon and patients with systemic sclerosis. Clin Rheumatol. 2020;39(8):2363-7. Doi: https://doi.org/10.1007/s10067-020-05023-5
van der Vaart R, Repping-Wuts H, Drossaert CH, Taal E, Knaapen-Hans HK, van de Laar MA. Need for online information and support of patients with systemic sclerosis. Arthritis Care Res (Hoboken). 2013;65(4):594-600. Doi: https://doi.org/10.1002/acr.21875
Schouffoer AA, Zirkzee EJ, Henquet SM, Caljouw MA, Steup-Beekman GM, van Laar JM, et al. Needs and preferences regarding health care delivery as perceived by patients with systemic sclerosis. Clin Rheumatol. 2011;30(6):815-24. Doi: https://doi.org/10.1007/s10067-010-1645-6
Wolf MS, Davis TC, Shrank WH, Neuberger M, Parker RM. A critical review of FDA-approved Medication Guides. Patient Educ Couns. 2006;62(3):316-22. Doi: https://doi.org/10.1016/j.pec.2006.06.010
Institute of Medicine. Best care at lower cost: the path to continuously learning health care in America. Washington: National Academies Press; 2013. Doi: https://doi.org/10.17226/13444
Aquino JA, Baldoni AO, Oliveira CL, Figueiredo RC, Cardoso CS, Pereira ML, et al. Educational booklet on diabetes: construction and content validation. Semina Ciênc Biol Saude. 2016;37(1):77-82. Doi: https://doi.org/10.5433/1679-0367.2016v37n1p77
Oliveira SC, Lopes MV, Fernandes AF. Development and validation of an educational booklet for healthy eating during pregnancy. Rev Lat Am Enfermagem. 2014;22(4):611-20. Doi: https://doi.org/10.1590/0104-1169.3313.2459
Passamai MPB, Sampaio HAC, Lima JWO. Letramento funcional em saúde de adultos no contexto do Sistema Único de Saúde. Fortaleza: EdUECE; 2013.
Hughes M. Effect of season on internet searches for information on raynaud phenomenon. J Rheumatol. 2019;46(11):1543-4. Doi: https://doi.org/10.3899/jrheum.190463
Downloads
Publicado
Edição
Seção
Licença
Copyright (c) 2021 Acta Fisiátrica
Este trabalho está licenciado sob uma licença Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.