“It is as if you were taking a shot in the dark”: Experiencing ambiguity in the pharmacological treatment of rheumatoid arthritis
Keywords:Rheumatoid arthritis; Qualitative research; Patient experience.
Rheumatoid arthritis (RA) is a chronic disease that compromises patients’ quality of life and it demands an indispensable and complex pharmacological treatment. The aim of the present study was to understand patients’ experiences with the pharmacological treatment of RA. In order to explore this area, interviews were conducted with patients with RA followed at an outpatient clinic. Merleau-Ponty’s theoretical framework was applied to understand the investigated phenomenon by using the essential structures of the experience (time, space, relationships with other people, and sexuality, all of which are anchored in the body). These were used to describe the central meanings of the patients’ medication experience. The data showed that patients experienced ambiguity during the RA treatment and that it pervaded all the essential structures of the experience. The experiences that emerged from data analysis were: “waiting for the proper treatment”; “hoping for its effectiveness and safety”; “rediscovering spaces lost because of the disease”; and “self-management in controlling symptoms”. Understanding these experiences allows for the healthcare team to offer more comprehensive, holistic and effective care, contributing to better health outcomes.
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.
How to Cite
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
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
1) Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
2) Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
3) Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work.