title: The lived experience of Sjögren's Syndrome.
abstract: BACKGROUND
  Sjögren's Syndrome is an autoimmune exocrinopathy characterised by lymphocytic infiltration of exocrine glands in multiple sites, with dry mouth as a primary presenting symptom. Although quantitative studies have shown the negative impact of both dry mouth and Sjögren's Syndrome on patients' quality of life, no qualitative diary and interview study has been undertaken to examine the lived experience of dry mouth for Sjögren's Syndrome sufferers. The aim of this qualitative study was to provide clinicians with insight into how dry mouth can impact on the daily lives of Sjögren's Syndrome patients.
  
  
  METHODS
  The American-European Consensus Group (AECG) Revised International Classification criteria were used to identify participants from patients seen in an oral medicine clinic. After pilot study work to test the approach, the 10 main study participants were recruited. Diary entries and semi-structured interviews were used to explore how dry mouth affects their lives. Owing to the exploratory nature of the research, thematic content analysis was applied, allowing the themes to arise naturalistically from the data without bias or elicitation.
  
  
  RESULTS
  The data showed that it is unrealistic to understand the experience of a single symptom, but that the disease as a whole needs to be taken into perspective. The empirical evidence supported four main themes that depicted the lived experience of Sjögren's Syndrome. These included: (1) the journey to diagnosis; (2) disease impact spectrum (of dry mouth amid other symptoms); (3) interactions with healthcare professionals; and (4) the positive coping process.
  
  
  CONCLUSIONS
  The findings revealed patients' perspectives on diagnosis, coping with dry mouth and Sjögren's Syndrome, and interaction with healthcare professionals. Dry mouth is not a trivial symptom for Sjögren's Syndrome sufferers; it has considerable impact on their day-to-day lives. Healthcare professionals need to understand patients as individuals in their environment in order to be part of the Sjögren's journey.
authors.affiliation: Department of Dental Surgery, Khoo Teck Puat Hospital, Singapore, Singapore. enephant@yahoo.com.sg.
authors.forename: Di Ying J
authors.initials: DYJ
authors.lastname: Ngo
authors.affiliation: Department of Oral Sciences, Sir John Walsh Research Institute, Faculty of Dentistry, University of Otago, Dunedin, New Zealand.
authors.forename: William M
authors.initials: WM
authors.lastname: Thomson
authors.affiliation: Department of Oral Health, Faculty of Health Sciences, Auckland University of Technology, Auckland, New Zealand.
authors.forename: Anita
authors.initials: A
authors.lastname: Nolan
authors.affiliation: Department of Marketing, School of Business, University of Otago, Dunedin, New Zealand.
authors.forename: Shelagh
authors.initials: S
authors.lastname: Ferguson
mesh_terms: D006801:Humans; D010865:Pilot Projects; D011788:Quality of Life; D012859:Sjogren's Syndrome / Q000150:complications*; D014987:Xerostomia / Q000150:complications*
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