Experience of living with Systemic Lupus Erythematosus: A phenomenological study

Background and Objective: Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease. Addition to various clinical manifestations it has spiritual, psycho-social and economic consequences. The present research was conducted aimed to describe the lived experiences of patients living with systemic lupus erythematosus.

Materials and Method: A qualitative study, using phenomenology approach was used. Ten patients with SLE who referred to rheumatology clinic in Bandar Abbas were selected through purposive sampling in 2012. Data generation was done through in-depth unstructured interview. Colaizzi's method of data analysis was used for analysis.

Results: The results of study demonstrated four main themes including Mental-emotional consequences, pain of recurrence of disease, forgotten socio-economic needs and inability to perform duties.

Conclusion: According to results, patients experience the wide range of problems and they need to take care of family and society concerning the physical aspects and receiving psychological support in psychological aspects. Because of the medical expenses and work-related disability, economic pressures propel them to dependence and challenge in meeting the needs of health care. Some of their needs remain unanswered

Keywords

Systemic lupus erythematosus

chronic disease

autoimmune

phenomenology

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