“É como se você estivesse dando um tiro no escuro”: Vivenciando a ambiguidade no tratamento farmacológico da artrite reumatoide
DOI:
https://doi.org/10.33448/rsd-v10i9.17071Palavras-chave:
Artrite reumatoide; Pesquisa qualitativa; Experiência do paciente.Resumo
A artrite reumatoide (AR) é uma doença crônica que compromete a qualidade de vida dos pacientes e requer um tratamento farmacológico indispensável e complexo. O objetivo do presente estudo foi compreender as experiências dos pacientes com o tratamento farmacológico da AR. Para tal, foram realizadas entrevistas em profundidade com indivíduos atendidos em um ambulatório. O referencial teórico de Merleau-Ponty foi aplicado para compreender o fenômeno investigado por meio das estruturas essenciais da experiência (tempo, espaço, relação com o outro e sexualidade). Os dados revelaram que os pacientes experienciam de forma mais significativa a ambiguidade durante o tratamento, e esta perpassa todas as estruturas essenciais, ressaltando a experiência da espera pelo tratamento adequado, pela sua efetividade e segurança, a redescoberta dos espaços perdidos com a doença e o autogerenciamento no controle dos sintomas. Compreender essas experiências proporciona a prestação de um cuidado mais integral, holístico e efetivo contribuindo para melhora dos resultados em saúde.
Referências
Alves, M. (2012).The medication experience of people living with HIV: From the understanding of the meanings of medication to the development of a conceptual framework of medication experience. Thesis, pharmacy, University of Minnesota. Minneapolis, USA.
Angermeyer, C. M. et al. (2001). Patients' and relatives' assessment of clozapine treatment. Psychological Medicine, 31(3), 509-517.
Arkell, P. et al. (2013) Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication – “It could give me two heads and I’d still try it!” BMC Musculoskeletal Disorders, 14(165), 1-7.
Baker, F. K. et al. (2019) “Living a normal life”: a qualitative study of patients’ views of medication withdrawal in rheumatoid arthritis. BMC Rheumatology, 3(24), 1-8.
Barry, A. C. (2001). Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor–patient communication in general practice. Social Science and Medicine, 53(4), 487-505.
Bordes, A. K., J. et al. (2018). Assessing information needs and use of online resources for disease self-management in patients with rheumatoid arthritis: a qualitative study. Clinical Rheumatology, 37(7), 1791-1797.
Brandstetter, S. et al. (2016). The lesser of two evils…’ – views of persons with rheumatoid arthritis on medication adherence: a qualitative study. Psychology and Health, 31(6), 675-692.
BRASIL. Ministério da Saúde. Secretaria de Ciência, Tecnologia e Insumos Estratégicos (2017). Protocolo clínico e diretrizes terapêuticas – Artrite Reumatoide. Portaria Conjunta nº 15, de 11 de dezembro de 2017.
Bykerk V.; Emery P. (2010) Delay in receiving rheumatology care leads to long-term harm. RA and Rheumatism. Arthritis and Rheumatism, 62(12), 3519-3521.
Corrêa, K. A. (1997) Fenomenologia : Uma alternativa para pesquisa em enfermagem. Revista Latino-americana de Enfermagem, 5(1), 83-88.
Craftman, G. A. et al. (2015). Older people’s experience of utilisation and administration of medicines
in a health- and social care context. Scandinavian Journal of Caring Sciences, 29(4), 760-768.
Cypress, S. Brigitte (2011). The lived ICU experience of nurses, patients and family members: A phenomenological study with Merleau-Pontian perspective. Intensive and Critical Care Nursing, 27(5), 273-280.
Cock et al. (2014). A detailed analysis of treatment delay from the onset of symptoms in early rheumatoid RA patients. Scandinavian Journal of Rheumatology, 43(1), 1-8.
Creswell, W. J. (1998). Qualitative Inquiry and Research Design: Choosing Among Five Traditions. Thousand Oaks, CA: Sage.
Devins, M. G. (1994). Illness intrusiveness and the psychosocial impact of lifestyle disruptions in chronic life-threatening disease. Advances in Renal Replacement Therapy, 1(3), 251-263.
Devlen, J. et al. (2014). The Burden of In fl ammatory Bowel Disease : A Patient-reported Qualitative Analysis and Development of a Conceptual Model. Inflammatory Bowel Diseases, 20(3), 545-552.
Dohnhammar, U.; Reeve, J.; Walley, T. (2016). Patients' expectations of medicines--a review and qualitative synthesis. Health expectations, 19(2), 179-193.
Elliott, A. R. (2008). Poor Adherence to Medication in Adults with Rheumatoid Arthritis. Disease Management and Health Outcomes, 16(1), 13-29,
Feldman, H. C. et al. (2013). Assessing the need for improved access to rheumatology care: a survey of Massachusetts community health center medical directors. Journal of Clinical Rheumatology, 19(7), 361-366.
Guest, G.; Bunce, A.; Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82
Gibson, G. (2016) “Signposts on the journey” ; medication adherence and the lived body in men with Parkinson’s disease. Social Science and Medicine, 152(C), 27-34.
Hallert, E. (2006). Disease activity, function and costs in early rheumatoid arthritis: The Swedish TIRA Project, Thesis, Faculty of Health Sciences, Linköping, University, Sweden.
Hewlett, S. et al. (2019). Dose reduction of biologic therapy in inflammatory arthritis: A qualitative study of patients' perceptions and needs. Musculoskeletal Care, 17(1), 63-71.
Hofmann, D. et al. (2015). Expectations of new treatment in rheumatoid arthritis: developing a patient-generated questionnaire. Health Expectations, 18(5), 995-1008.
Holland, P.; Collins, M. A. (2018). "Whenever I can I push myself to go to work": a qualitative study of experiences of sickness presenteeism among workers with rheumatoid arthritis. Disability and
Rehabilitation, 40(4), 404-413.
Kalkan, A. et al. (2014). Factors influencing rheumatologists' prescription of biological treatment in rheumatoid arthritis: an interview study. Implementation Science, 9(153), 1-12.
Kobue, B.; Moch, S.; Watermeyer, J. (2017 ).“ It’s so hard taking pills when you don’t know what they’re for ” : a qualitative study of patients ’ medicine taking behaviours and conceptualisation of medicines in the context of rheumatoid arthritis. BMC Health Services Research, 17(303), 1-12.
Kumar, K. et al. (2011).“ It’s like taking poison to kill poison but I have to get better ’: A qualitative study of beliefs about medicines in Rheumatoid arthritis and Systemic lupus erythematosus patients of South Asian origin. Lupus, 20(8), 837-844.
Kvigne, K.; Kirkevold, M. (2003). Living With Bodily Strangeness: Women’s Experiences of Their Changing and Unpredictable Body Following a Stroke. Qualitative Health Research, 13(9), 1291-1310.
Lard, R. L. (2001). Early versus delayed treatment in patients with recent-onset rheumatoid RA: Comparison of two cohorts who received different treatment strategies. American Journal of Medicine, 111(6), 446-451.
Lindén, C.; Björklund, A. (2010). Living with rheumatoid arthritis and experiencing everyday life with TNF- a blockers. Scandinavian Journal of Occupational Therapy, 17(4), 326-334.
Linden et al. (2010). Long-term impact of delay in assessment of patients with early RA. Arthritis and Rheumatism, 62(12), 3537-3546.
Marshall, N. J. et al. (2004). Patients’ perceptions of treatment with anti-TNF therapy for rheumatoid arthritis: a qualitative study. Rheumatology, 43(8), 1034-1038.
Matthews, E. (2011). Compreender Merleau-Ponty. (2. ed). Petrópolis: Editora Vozes.
Merleau-ponty, M. (2011). Fenomenologia da percepção. 4. ed. São Paulo: Editora WMF Martins Fontes.
Meyfroidt, S. et al. (2015). Patient Education and Counseling Patient experiences with intensive combination-treatment strategies with glucocorticoids for early rheumatoid arthritis. Patient Education and Counseling, 98(3), 384-390.
Minayo, S. M. C. (2014). O desafio do conhecimento: pesquisa qualitativa em saúde. São Paulo, SP: Hucitec.
Minayo, S. M. C. (2017). Amostragem e saturação em pesquisa qualitativa: consensos e controvérsias. Revista de Pesquisa Qualitativa, 5(7), 1-12.
Mota M. H., L. et al. (2017) Recommendations of the Brazilian Society of Rheumatology for the pharmacological treatment of rheumatoid arthritis. Advances in Rheumatology, 58(1), 1-17.
Nascimento, A., Y.; Silva D., L.; Ramalho-de-oliveira, D. (2020). Experiences with the daily use of medications among chronic hepatitis C patients. Research in Social and Administrative Pharmacy, 16(1), 33-40.
Nascimento, A., Y. et al. (2017b). A fenomenologia de Merleau-Ponty nas investigações sobre o uso de medicamentos : construção de uma cascata metodológica. Revista da Escola de Enfermagem da USP, 51(e), 1-8.
Nell et al. (2004). Benefit of very early referral and very early therapy with disease-modifying anti-rheumatic drugs in patients with early rheumatoid arthritis. Rheumatology, 43(7), 906-914.
Pasma, A. et al. (2015). Facilitators and barriers to adherence in the initiation phase of Disease-modifying Antirheumatic Drug (DMARD) use in patients with arthritis who recently started their first DMARD treatment. The Journal of Rheumatology, 42(3), 379-385.
Pinter, J. et al. (2017). Perspectives of Older Kidney Transplant Recipients on Kidney Transplantation. Clinical Journal of the American Society of Nephrology, 12(3), 443-453.
Polit, F. D. & Chery, T. B. (2004). Nursing Research: Principles and Methods, (7th ed.). Philadelphia: Lippincott, Williams and Wilkins.
Pound, P. et al. (2005). Resisting medicines: a synthesis of qualitative studies of medicine taking. Social Science and Medicine, 61(1), 133-155.
Prothero, L. et al. (2016). Patients' and carers' views and expectations about intensive management for moderate rheumatoid arthritis: a qualitative study. Psychology, Health and Medicine, 21(8), 918-925.
Ramalho de oliveira, D. (2011). Atenção Farmacêutica: da filosofia ao gerenciamento da terapia medicamentosa. São Paulo: RCN.
Ramalho de oliveira, D. (2009). Experiência subjetiva com a utilização de medicamento (The Medication Experience): conceito fundamental para o profissional da Atenção Farmacêutica. Revista
Racine, 19(113), 90-96.
Ramalho-de-oliveira, D. et al (2012). Preventing and resolving drug therapy problems by understanding patients’ medication experiences. Journal of the American Pharmacists Association, 52(1), 71-80.
Raza K. et al. (2011). Delays in assessment of patients with rheumatoid RA: Variations across Europe. Annals of the Rheumatic Diseases, 70(10), 1822-1825.
Salt, E.; Peden, A. (2011). The Complexity of the Treatment: The Decision-Making Process Among Women With Rheumatoid Arthritis. Qualitative Health Research, 21(2), 214-222.
Santos; R., S. (1999). Qualitative and quantitative methods in biomedical research, Jornal de pediatria, 75(6), 401-406.
Sanders, P. (1982). Phenomenology: a new way of viewing organizational research. Academy of management review, 7(3), 353-360.
Senna, R. E. et al. (2004). Prevalence of rheumatic diseases in Brazil: a study using the copcord approach. Journal of Rheumatology, 31(3), 594-597.
Shaw, Y. (2018). Rheumatoid arthritis patients’ motivations for accepting or resisting disease-modifying antirheumatic drug treatment regimens. Arthritis Care and Research, 70(4), 533-541.
Shoemaker, J. S.; Ramalho de oliveira, D. (2008). Understanding the meaning of medications for patients: the medication experience. Pharmacy World and Science, 30(1), 86-91.
Singh, A., J. et al. (2016). American College of Rheumatology Guideline for the Treatment of Rheumatoid Arthritis. Arthritis Rheumatology, 68(1), 1-26.
Smolen, S., J. et al. (2017). EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease‐modifying antirheumatic drugs: 2016 update. Annals of the Rheumatic Diseases, 76(6), 960-977.
Todd, A. et al. (2016). I don’t think I’d be frightened if the statins went’: a phenomenological qualitative study exploring medicines use in palliative care patients, carers and healthcare professionals. BMC Palliative Care, 15(13), 1-7.
Turato, E. R. (2005). Métodos qualitativos e quantitativos na área da saúde: definições, diferenças e seus objetos de pesquisa. Revista de Saúde Pública, 39(3), 507-514.
Van Aken et al. (2004). Radiological outcome after four years of early versus delayed treatment strategy in patients with recent onset rheumatoid arthritis. Annals of the Rheumatic Diseases, 63(3), 274-279.
Voshaar, M. et al. (2016). Barriers and facilitators to disease-modifying antirheumatic drug use in patients with inflammatory rheumatic diseases: A qualitative theory-based study. BMC Musculoskeletal Disorders, 17(1), 1-12.
Downloads
Publicado
Como Citar
Edição
Seção
Licença
Copyright (c) 2021 Carina de Morais Neves; Yone de Almeida Nascimento; Mariana Martins Gonzaga do Nascimento; Hágabo Mathyell Silva ; Isabela Viana Oliveira; Simone de Araújo Medina Mendonça; Adriana Maria Kakehasi; Djenane Ramalho de Oliveira
Este trabalho está licenciado sob uma licença Creative Commons Attribution 4.0 International License.
Autores que publicam nesta revista concordam com os seguintes termos:
1) Autores mantém os direitos autorais e concedem à revista o direito de primeira publicação, com o trabalho simultaneamente licenciado sob a Licença Creative Commons Attribution que permite o compartilhamento do trabalho com reconhecimento da autoria e publicação inicial nesta revista.
2) Autores têm autorização para assumir contratos adicionais separadamente, para distribuição não-exclusiva da versão do trabalho publicada nesta revista (ex.: publicar em repositório institucional ou como capítulo de livro), com reconhecimento de autoria e publicação inicial nesta revista.
3) Autores têm permissão e são estimulados a publicar e distribuir seu trabalho online (ex.: em repositórios institucionais ou na sua página pessoal) a qualquer ponto antes ou durante o processo editorial, já que isso pode gerar alterações produtivas, bem como aumentar o impacto e a citação do trabalho publicado.
