Living With Rheumatoid Arthritis in Spain: A Qualitative Study of Patient Experience and the Role of Health Professionals.

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.

The life and death construct in heart transplant patients.

BACKGROUND: The technological advances of medicine, and specifically the techniques of organ transplants, have allowed crossing the border of life and death. This is especially relevant in the case of heart transplant, since its symbolism requires a redefinition not only of these traditional concepts, but also of the body or of one's own identity. AIMS: To explore the experiences of patients after receiving a heart from a donor. METHODS: A phenomenological qualitative approach, through Merleau Ponty and Levinas perspectives, was conducted to capture the subjective experiences of heart transplant patients. We conducted 22 in-depth interviews: 12 with heart transplant patients from two hospitals in Madrid (Spain), and 10 with relatives who lived with them. RESULTS: The line between life and death is erased for heart transplant patients. Three main themes arose from the analysis: towards death, the frontier between life and death, and towards life. The need to redefine the concepts of life and death is structured around issues such as the thought of facing one's own death and the concept of gift and resurrection. CONCLUSION: 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.