![[ Visit Client Website ]](images/banner.gif)
Background
Fatigue is a prominent and burdensome problem for most patients with systemic lupus erythematosus (SLE). As a clinical symptom fatigue is nevertheless often neglected by care givers, and patients also describe that neither family nor friends show enough understanding for their tiredness and exhaustion.
Purpose
To explore patients’ own perception of the experience of living with SLE-related fatigue, with core interest; how the patients themselves describe the feeling of fatigue, how fatigue influences the persons life and which strategies are used to manage daily life with fatigue.
Method
Informants (n=32) for focus group discussions were recruited from a SLE patient cohort at a University Hospital, where the patients have been subjects of a large (N=250) cross-sectional study including medical examinations as well as nursing and physiotherapy aspects. All informants in the focus group discussions were women.
Data collection was performed by focus groups interview with a group size of 3-6 patients with 2 researchers present as interview leader and observer respectively. An interview guide was constructed to ensure that topics were equally covered in each focus group. Interviews were audiotaped, transcribed verbatim, and followed by a qualitative and inductive analysis resulting in themes.
Results
Descriptions of the theme “perceptions of fatigue” were divided into a physical and a psychosocial domain. In the physical domain, the respondents described fatigue as a feeling of physical heaviness and exhaustion, whereas in the psychosocial domain, the respondents described that they associated fatigue with problems related to their ability to focus and concentrate on work tasks and in social interaction. In the theme of “strategies” several respondents express their belief that physical activity, such as walking, could reduce their fatigue, but a reported problem was that they often felt too exhausted to even start an activity. Others described that they had been forced to develop the strategy to “seize the day” to have the possibility to do the things they wanted to do the most. The respondents’ description of their feeling of fatigue, problems encountered in daily life at work and at home, and experiences finding ways to manage fatigue was also further explored in the study.
Conclusion
Given the opportunity to express the consequences of fatigue with their own words, patients report a multidimensional array of complex physical and psychosocial aspects on this burdensome symptom. The patients’ own perceptions of disease and disease-related consequences should have strong impact on the organization of care, and patient derived experiences of management strategies for fatigue should have a prominent place in patient education design. Patients’ own experiences can also contribute to solid ground in future intervention programs for SLE-patients with fatigue.
Fatigue is a prominent and burdensome problem for most patients with systemic lupus erythematosus (SLE). As a clinical symptom fatigue is nevertheless often neglected by care givers, and patients also describe that neither family nor friends show enough understanding for their tiredness and exhaustion.
Purpose
To explore patients’ own perception of the experience of living with SLE-related fatigue, with core interest; how the patients themselves describe the feeling of fatigue, how fatigue influences the persons life and which strategies are used to manage daily life with fatigue.
Method
Informants (n=32) for focus group discussions were recruited from a SLE patient cohort at a University Hospital, where the patients have been subjects of a large (N=250) cross-sectional study including medical examinations as well as nursing and physiotherapy aspects. All informants in the focus group discussions were women.
Data collection was performed by focus groups interview with a group size of 3-6 patients with 2 researchers present as interview leader and observer respectively. An interview guide was constructed to ensure that topics were equally covered in each focus group. Interviews were audiotaped, transcribed verbatim, and followed by a qualitative and inductive analysis resulting in themes.
Results
Descriptions of the theme “perceptions of fatigue” were divided into a physical and a psychosocial domain. In the physical domain, the respondents described fatigue as a feeling of physical heaviness and exhaustion, whereas in the psychosocial domain, the respondents described that they associated fatigue with problems related to their ability to focus and concentrate on work tasks and in social interaction. In the theme of “strategies” several respondents express their belief that physical activity, such as walking, could reduce their fatigue, but a reported problem was that they often felt too exhausted to even start an activity. Others described that they had been forced to develop the strategy to “seize the day” to have the possibility to do the things they wanted to do the most. The respondents’ description of their feeling of fatigue, problems encountered in daily life at work and at home, and experiences finding ways to manage fatigue was also further explored in the study.
Conclusion
Given the opportunity to express the consequences of fatigue with their own words, patients report a multidimensional array of complex physical and psychosocial aspects on this burdensome symptom. The patients’ own perceptions of disease and disease-related consequences should have strong impact on the organization of care, and patient derived experiences of management strategies for fatigue should have a prominent place in patient education design. Patients’ own experiences can also contribute to solid ground in future intervention programs for SLE-patients with fatigue.
S. Pettersson, Occasional given lectures for Abbott Immunology, Schering Plough and Wyeth, 9; E. Svenungsson, None; I. Gunnarsson, None; E. Welin Henriksson, Occasional lectures given for Abbott Immunology, Schering Plough and Wyeth, 9.