Illness Experiences of Chilean Women With Sjögren's Syndrome: The Patient Perspective
| Autor: | Herrera, A., Sánchez, G., Espinoza, I., Wurmann, P., Leiva, L., Geenen, R., Rojas-Alcayaga, G., Leerstoel Geenen, Clinical Psychology (overkoepelend voor heel KP) |
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| Rok vydání: | 2019 |
| Předmět: |
Adult
Health Knowledge Attitudes Practice Attitude of Health Personnel media_common.quotation_subject Health Status MEDLINE Psychological intervention Disease Interviews as Topic Life Change Events Rheumatology Cost of Illness Patient Education as Topic Adaptation Psychological Medicine Cluster Analysis Humans Chile media_common Aged business.industry Perspective (graphical) Social environment Professional-Patient Relations Middle Aged Checklist Sadness Mental Health Sjogren's Syndrome Quality of Life Women's Health Female Psychological resilience business Psychosocial Clinical psychology |
| Zdroj: | Arthritis Care and Research, 73(8), 1210. John Wiley and Sons Inc. |
| ISSN: | 2151-4658 2151-464X |
| Popis: | Objective Sjogren'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. |
| Databáze: | OpenAIRE |
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