Abstract

Introduction and purpose Illness experiences of women with oral dryness and health-related behaviors as a result of Sjögren’s syndrome (SS) could be important for oral health care. SS is a rheumatic autoimmune disease that impairs different bodily organs and tissues, particularly the lacrimal and salivary glands. Xerostomia and damage to oral tissues are the main problems affecting patients and they could be important contributing factors to impair daily life. The aim of this study was to give an in-depth account of the life experiences and health-related behaviors in women with oral dryness as a result of Sjögren Syndrome. Methods. The investigation was an exploratory relational study employing qualitative methodology based on in-depth interview. Interviews were carried out with women with SS who regularly attended the Clinical Hospital of the University of Chile or who are member of the Sjögren Chile Association. All participants were adult Chilean women aged over 45 and diagnosed with SS according to established criteria.The size of the sample was determined by the principle of theoretical saturation, which means that data collection is finished at the point when additional data from interviews seems redundant in the light of the emergent model. The data were analyzed using methods based on the principles of grounded theory. The constant comparative method was used. It is a general approach to analyze qualitative data using explicit coding and analytic procedures to generate and suggest categories, properties and hypotheses. The Ethics Committee of the Faculty of Dentistry of the University of Chile approved the study. Results. Oral symptoms are frequently associated with limitations in daily life (household, social and work activities) which patients live with varying degrees of difficulty and experience as a loss of their usual capabilities. (However,) Oral dryness is not recognized as a symptom of disease and it is a cause of delayed SS diagnosis and poor dental care. Withdrawal from social activities is a result of the discomfort or embarrassment that patients may experience for presenting certain symptoms, oral functional limitations or dental aesthetic defects. Household limitations and inability to work are associated with oral functional difficulties and general symptoms, mainly fatigue. Conclusions. Oral functional difficulties (speech, swallowing and taste), oral tissue damage (caries, fungal infections) and general symptoms of SS (pain and fatigue) affect self-perception and self-esteem. Interference with social role and consequently social isolation are experienced by many patients. This finding is consistent with the results of studies that used measures such as the SF-36 to evaluate Health Related Quality of Life (HRQOL). A better health status and appropriated oral care of women with SS requires careful consideration of psychosocial aspects.