THE MEANING OF LIVING WITH LUPUS

Abstract

Systemic Lupus Erythematosus [SLE] is a multi-system auto immune disorder of a heterogeneous character and unknown etiology, that mostly affects women. Although knowledge related to SLE has grown significantly, it has been studied preferrably from a quantitative perspective. On a global level, qualitative studies are scarce. This article presents a case study of a person living with SLE, with the objective of contributing to increasing knowledge related to what it means to someone to live with this chronic pathology. Methodology: phenomenologic qualitative study, based on the phenomenology of the essences of HusserL A case study was carried out using in depth interviews and analysis with the method proposed by Colaizzi It was interviewed a Chilean woman, 65 years o/d, with SLE from ten years. Results: the phenomenon being studied revealed six emerging clusters: "living with the health transition process to reinvent life"; "valuing received support', 'feeling limited', "self help", "confronting an unknown illness" and "needing to be understood'. Discussion: the clusters 'feeling limited' and "needing to be understood' are similar to those mentioned in previous research, such as in Goodman, Morrissey, Gram and Bossingham (2005) and Hale et al (2006). In this case study, lesser known perceptions are revealed for healthcare professiona/s that can guide change in clinical practice, allowing for professionals to offer holistic and personalized care