Abstract
Introduction and purpose
Sjögren’s syndrome is characterized by infiltration of the exocrine glands, resulting in dryness of eyes, mouth, and other parts of the body which is a burden to everyday functioning and well-being. The aim of this study was to categorize the full spectrum of life experiences of women with Sjögren’s syndrome in an integrated, hierarchical model, and to examine the degree to which these sorted life experiences are experienced.
Methods
Using a concept mapping technique, 52 women with Sjögren’s syndrome from the Netherlands structured and interpreted life experienced that were derived from a previous interview study (Rojas‐Alcayaga et al. Musculoskeletal Care 2016;14:233-242). In a current card-sorting task, research participants individually sorted 75 experiences in piles using similarity of content as a criterion. Hierarchical cluster analysis was used to obtain an integrated, hierarchical model of these sortings. The 52 participants indicated on a 4-point Likert scale whether they had had these 75 experiences themselves: agree, agree a little, disagree a little, disagree.
Results
Hierarchical cluster analysis showed 14 clusters of life experiences in 6 overarching categories: 1: Primary symptoms, 2: Social functioning (relationships, role function barriers), 3: Self-management (self-care, acceptance, self-management, medical treatment), 4: Emotion processing (psychological vulnerability, crying problems, anxiety), 5: Ignorance (lack of understanding, psychologizing, not recognizing the disease, diagnosis), and 6: Experiences with physicians. Patients generally agreed to have experiences of ‘primary symptoms’, ‘role function barriers’, and ‘diagnosis’ and they commonly disagreed having ‘psychologizing’ experiences, while they differed in the degree to which they had individually experienced the other experiences.
Conclusion
Life experiences of women with Sjögren’s syndrome were summarized in an integrated, hierarchical model. The overview with life experiences from the patient’s view can be used to improve screening in clinical consults, develop a questionnaire, give direction to future research, and enhance education and self-management support. To enhance generalizability, the results of this study form the Netherlands will be integrated with results from Chile.
Sjögren’s syndrome is characterized by infiltration of the exocrine glands, resulting in dryness of eyes, mouth, and other parts of the body which is a burden to everyday functioning and well-being. The aim of this study was to categorize the full spectrum of life experiences of women with Sjögren’s syndrome in an integrated, hierarchical model, and to examine the degree to which these sorted life experiences are experienced.
Methods
Using a concept mapping technique, 52 women with Sjögren’s syndrome from the Netherlands structured and interpreted life experienced that were derived from a previous interview study (Rojas‐Alcayaga et al. Musculoskeletal Care 2016;14:233-242). In a current card-sorting task, research participants individually sorted 75 experiences in piles using similarity of content as a criterion. Hierarchical cluster analysis was used to obtain an integrated, hierarchical model of these sortings. The 52 participants indicated on a 4-point Likert scale whether they had had these 75 experiences themselves: agree, agree a little, disagree a little, disagree.
Results
Hierarchical cluster analysis showed 14 clusters of life experiences in 6 overarching categories: 1: Primary symptoms, 2: Social functioning (relationships, role function barriers), 3: Self-management (self-care, acceptance, self-management, medical treatment), 4: Emotion processing (psychological vulnerability, crying problems, anxiety), 5: Ignorance (lack of understanding, psychologizing, not recognizing the disease, diagnosis), and 6: Experiences with physicians. Patients generally agreed to have experiences of ‘primary symptoms’, ‘role function barriers’, and ‘diagnosis’ and they commonly disagreed having ‘psychologizing’ experiences, while they differed in the degree to which they had individually experienced the other experiences.
Conclusion
Life experiences of women with Sjögren’s syndrome were summarized in an integrated, hierarchical model. The overview with life experiences from the patient’s view can be used to improve screening in clinical consults, develop a questionnaire, give direction to future research, and enhance education and self-management support. To enhance generalizability, the results of this study form the Netherlands will be integrated with results from Chile.
| Original language | English |
|---|---|
| Pages (from-to) | S65 |
| Journal | International Journal of Behavioral Medicine |
| Volume | 25 |
| Issue number | Supplement 1 |
| Publication status | Published - 2018 |