Illness Experiences in Women with Oral Dryness as a Result of Sjögren's Syndrome: The Patient Point of View

Alcayaga, Gonzalo Rojas; Herrera, Andrea; Santander, Iris Espinoza; Reydet, Claudia Bustos; Erazo, M. Ríos; Wurmann, Pamela; Sabugo, Francisca; Geenen, Rinie

doi:10.1002/msc.1134

Cited by 9 publications

(17 citation statements)

References 32 publications

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“…Uncertainty and lack of awareness are characteristics of SS. This finding is consistent with a previous study showing that the uncertainty and strangeness experienced by patients with SS are phenomena that impact daily life (13).…”

Section: Discussionsupporting

confidence: 93%

“…This delay is relevant, because symptoms of dryness are a core symptom of the disease (15–19). The fear of losing teeth, another illness experience with high concordance, is related to objective aspects, such as the decrease in salivary flow that occurs in SS (20–24); however, for interviewees, this fear does not necessarily come from direct experience with professionals but rather from information they receive through the internet (13).…”

Section: Discussionmentioning

confidence: 99%

“…When assessing their health condition, patients consider somatic experiences that are unique for SS, such as dryness and related psychological, functional, and social consequences, which probably influence the overall interpretation of the disease that they experience. The psychological response to SS is related to loss of health but also to a lack of knowledge of the disease and problems within social interaction (13). In interviews, patients reported experiencing feelings of sadness, abandonment, and powerlessness and difficulties in maintaining social relationships, while social support is fundamental to maintaining activities and sustaining social networks (13).…”

Section: Introductionmentioning

confidence: 99%

“…The psychological response to SS is related to loss of health but also to a lack of knowledge of the disease and problems within social interaction (13). In interviews, patients reported experiencing feelings of sadness, abandonment, and powerlessness and difficulties in maintaining social relationships, while social support is fundamental to maintaining activities and sustaining social networks (13). Results from these interviews are considered a basis for the comprehensive description that the current study aims to provide.…”

Section: Introductionmentioning

confidence: 99%

“…The first aim of the current study was to structure and summarize the individual life experiences of Chilean women with SS in an integrated model using a concept mapping method. Based on previous research, the expectation was that multiple life domains would be influenced by SS, especially illness experiences, psychological responses, and social interaction (13), and that efforts to manage the disease would be part of the life experiences of patients (14). Moreover, we aimed to determine the degree of agreement with the experiences of illness among patients with SS by using a checklist including all identified experiences.…”

Section: Introductionmentioning

confidence: 99%

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Illness Experiences of Chilean Women With Sjögren’s Syndrome: The Patient Perspective

Herrera

Sánchez

Espinoza

et al. 2021

Arthritis Care & Research

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Objective Sjögren’s syndrome (SS) challenges everyday functioning and well‐being. The aim of this study was to structure and summarize the life experiences of Chilean women with SS in an integrated model. Methods Interviews from a previous study yielded 75 experiences of living with SS. A sample of 30 women with SS sorted these experiences by content and rated their level of agreement with each experience. A hierarchical cluster analysis was used to structure the experiences of the participants with SS in a comprehensive overview. A team‐based consensus analysis was used to define the number of clusters. The level of agreement was examined with Wilcoxon’s signed rank test. Results Ten clusters were identified and grouped into 6 main categories: symptoms (clusters: mucosal dryness and related symptoms), social environment, emotion management (clusters: fears and sadness), information (clusters: uncertainty and lack of knowledge), coping strategy (clusters: resilience and self‐care), and health staff relationship. The clusters that describe the more common experiences among patients were resilience, self‐care, uncertainty, lack of knowledge, health staff relationship, and mucosal dryness. Conclusion This study provided an integrated and structured overview of disease experiences comprising both biomedical and psychosocial aspects as being of vital importance for the health of patients with SS. The overview can be used to get a quick impression of disease experiences that are important for an individual patient, in a therapeutic goal setting, and in the construction and evaluation of medical and nonmedical interventions or education.

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Section: Discussionsupporting

confidence: 93%