Background Systemic Lupus Erythematosus (SLE) is a multisystemic, inflammatory autoimmune disease of unknown etiology that presents a variety of clinical symptoms and prognosis. The course of the disease varies from mild to severe, even fatal. SLE generally affects women in their most productive years. As SLE survival is improving, caring for people with SLE represents a challenge for the health care team.
There are few qualitative studies in this area. New in-depth studies would be a contribution to understanding the meaning of living with SLE. This would enable health professionals to offer better health care for people living with this disease.
Objectives The aim of the study was to describe what it means for Chilean women to live with SLE.
Methods A qualitative phenomenological study was conducted. A convenient sampling of 10 Chilean females with SLE consulting at the health facilities of the “Red de Salud de la Pontificia Universidad Católica de Chile”, and from the ”Agrupación Lupus Chile” were included and interviewed, until data saturation criteria was met. All interviews were tape-recorded and transcribed verbatim. A phenomenological analysis and membercheck validation was done (1).
Results Participants median age was 41.5 years (range 21-55), and median SLE duration since diagnosis was 6.5 years (range 2-16). Living with SLE for these women meant a multiple process of experiences that changed every aspect of their lives. During the experience of living with SLE, all themes that emerged were related to each other, and 6 comprehensive categories were unveiled: 1. A drastic life change (1.1 Before and after lupus, 1.2 Changes in my body and mind, 1.3 Changes in my mood and emotions, 1.4 Economic changes and difficulties), 2. Uncertainty (2.1 Fear of the flares, 2.2 Fear of the consequences for my future), 3. Living with limitations (3.1. Living with social limitations, 3.2 Living with limitations in my daily life), 4. Living with a search process (4.1 Searching for support, 4.2 Finding lack of comprehension, 4.3 Searching for sense of the disease), 5. Accepting the disease, and 6. The desire to help others.
Conclusions From the knowledge gained, a general and comprehensive overview about what it means for Chilean women to live with SLE was achieved. The 6 themes (comprehensive categories) had a temporal and enduring expression, starting with the drastic life change and continuing through to the desire to help others. This established the need to understand the relevance of the experiences of people living with SLE, to determine their health care, treatment and their participation in the health care system. In Chile, people with SLE must pay for their own treatment. The results suggest the importance of including specific care programs focused on the needs of people with SLE, within their historical and cultural context, with clear objectives that help to deliver the best care possible, with specific and evidence-based recommendations, and with the support of governmental health institutions. This is an effort that could help health care professionals to improve decision making to delineate SLE management in Chile.
Streubert HCD. Qualitative research in Nursing: Advancing the humanistic imperative. USA: Lippincott; 1999.
Acknowledgements FONDECYT Grant #1110849.
School of Nursing, Pontificia Universidad Católica de Chile: This is part of a thesis to obtain a Master`s degree in Science of Nursing.
Disclosure of Interest None Declared
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