The aim of this study was to explore the experience of Spanish people living with rheumatoid arthritis (RA) and the support these people received from health professionals, particularly nurses. Nineteen patients with >1 year diagnosis, disease activity moderate or severe (DAS28 > 3.2), and already treated with disease-modifying antirheumatic drugs (DMARDs) were interviewed. A thematic analysis was performed to interpret the discourses. The difficulties of symptom management; the need for home-adaptations, the difficulties of living with a deteriorating self-image; and the reluctant reliance on medication to control their disease were the main themes that emerged from the discourse analysis of this study. Nurses appeared to have a limited role in RA patients care, and focused primarily on giving information and training for biological therapies. RA patients in Spain would benefit from having contact with specialist nurses who could empower them to self-manage their disease, as happens in other countries.
Organ transplant techniques open the door to a new definition of death, of the identity of the body and its parts and the limits of life. Considering the cultural, legal, psychological, social and symbolic elements involved in the heart transplant process, a qualitative approach provides new avenues of understanding the clinical process from the patients' perspective.
BackgroundThe impact of rheumatoid arthritis (RA) on the lives of people is a constant in the studies explored. However, research shows the lack of impact that this has on clinical consultations, despite the influence it may have on the attitude of the person with RA towards treatment adherence. In the Spanish context, except for the study by Devillard & Otegui (1991), the experience of living with RA has scarcely been addressed.ObjectivesTo explore the experience of living with RA in Spain.MethodsIn-depth interviews were conducted with a group of patients from two hospitals in the two main Spanish cities: Madrid and Barcelona. The interviews were conducted between April 2014 and February 2015. Thematic analysis was done, identifying the main themes and subthemes and organizing data in a coding framework that allows their interpretationResultsPatients with disease activity moderate or severe (DAS28 >3.2), and already treated with DMARD, were aged 40–79, 15 were women and 4 men. Three main categories emerged from the discourses. (Table 1)ConclusionsRA patients know well what is it like to get up in the morning, tired, stiff, sore and having to rethink their day. Prioritization and planning activities are key to the organization of the activity and rest. Families and external aid, in case they can afford it, are the most common supports on which the requested supports pivot.The constant development of new therapeutic strategies and outbreaks of the disease determine the use of an important therapeutic arsenal, with unpleasant side effects, and that should be administered in a hospital setting. This need to rely on medical treatment also extends to doctors, as part of the therapeutic strategy. Nurses are absent from the speeches of our participantsRA patients in our study feel they are mainly on their own to cope with their disease. The new therapeutic strategies have improved the symptoms' control, but they feel they need more than drugs to cope with their daily life. Contrary to the variety of professionals, institutions and organizations that try to empower patients to self manage their disease in other countries, the Spanish attention pivot mainly in rheumatologists.References Devillard, Marie Jose; Otegui, Rosario; García, Pilar. La voz callada. Aproximaciones antropolόgico-social al enfermo de artritis reumatoide. Madrid: Comunidad de Madrid. Consejería de Salud; 1991. Disclosure of InterestNone declared
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