Invisible, Uncontrollable, Unpredictable: Illness Experiences in Women with Sjögren Syndrome

HERRERA-RONDA, ANDREA CRISTINA; LEIVA-BAHAMONDES, LORETO EVELYN; Espinoza, Iris; Rios-Erazo, Matias; Shakhtur, Nailah; Wurmann, Pamela A.; Rojas-Alcayaga, Gonzalo

Abstract

Background/Objectives: Sjögren’s Syndrome (SS) is a chronic degenerative rheumatic disease. Because of its chronic nature, it significantly affects the quality of life of those who suffer from it. Methods: This qualitative study investigated disease experience among women suffering from SS to understand its impact on their overall well-being. In-depth interviews were conducted with 15 women who suffer from SS. Interviews were analyzed using the Grounded Theory methodology, using open, axial, and selective coding. Results: Three central phenomena of disease experience were identified: invisibility; uncontrollability; and unpredictability. Conclusions: SS disease experience has a strong imprint on emotional well-being and sense of self-control among middle-aged women. Understanding SS impacts on women’s lives is important to better understand the disease and contribute to recognizing potential areas of management and social support in relevant windows of opportunity within the health-disease continuum.

Más información

Título según WOS: Invisible, Uncontrollable, Unpredictable: Illness Experiences in Women with Sjögren Syndrome
Título según SCOPUS: ID SCOPUS_ID:85195808462 Not found in local SCOPUS DB
Título de la Revista: Journal of Clinical Medicine
Volumen: 13
Fecha de publicación: 2024
DOI:

10.3390/JCM13113228

Notas: ISI, SCOPUS