Systemic lupus erythematosus patient guide: influence on knowledge of the disease (original) (raw)
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Arthritis & Rheumatism, 1991
The findings of this descriptive study of learned response to chronic illness over time of 291 persons having a diagnosis of systemic lupus erythematosus (SLE) who had attended a series of self-management classes demonstrated significant change in learned response over time. Self-help model variables that significantly contributed to the change were uncertainty, depression, enabling skill, self-efficacy, and self-worth. Uncertainty and depression decreased over time while enabling skill, self-efficacy, and selfworth increased. Subjects also demonstrated significant increases in self-help course tied variables of SLll knowledge and both the range and number of rest, relaxation, heat, and exercise activities. The purpose of this study was to describe learned response to chronic illness experience of persons having diagnosis of systemic lupus erythematosus (SLE) who participated in a SLE (Lupus) Self-Help Course. The self-help course was designed to assist persons having a diagnosis of SLE with self-management of their chronic illness experience. Halroyd and Creer [ 11 define self-management as the assumption of preventive or therapeutic health-care activities, often in collaboration with health-care professionals.
Perspective of the Self-knowledge of the Disease
2016
Background: It is clear that health literacy, namely having knowledge about one’s own disease (self-knowledge of the disease) and its management, is fundamental for reducing the impact of bronchial asthma, namely in terms of a patient’s asthma control and quality of life. Thus, the aims of the present study were to analyze the relevance and gaps of self-knowledge about asthma in the asthmatic patient; to evaluate whether having asthma affects the level of self-knowledge of the disease and which factors may be associated with poorer selfknowledge about asthma and, finally, whether this is different in the elderly versus younger asthmatic patients. Methods: Cross-sectional assessment of 92 elderly and 100 non-elderly asthmatic patients followed at Centro Hospitalar Cova da Beira, Portugal, with a control group of 100 elderly and 100 non-elderly non asthmatic patients. All volunteers signed a written informed consent form. Standardized and validated questionnaires were applied in order...
Illness perception and information behaviour of patients with rare chronic diseases
Inf. Res., 2016
This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies, and some health information behaviour practice may be associated with better coping and more favourable perception of illness. Print and online surveys containing questions about health information behaviour and illness perception were conducted in 2013, on a sample representing adult patients suffering from three rare diseases (systemic lupus erythematous, scleroderma and myasthenia gravis) in Croatia. Quantitative analyses were carried out on 146 questionnaires using the SPSS statistical package. Besides descriptive statistics, Chi-Square test, T-test and Kruskal Wallis tests were used to test possible differences between the groups in the sample. Spearman's rank correlation was used for testing statistical dependence between variables. Statistical difference was tested at the level ...
Patient information and coping styles in multiple sclerosis
Multiple Sclerosis Journal, 2007
Background Patients with multiple sclerose (MS) live with their disease for many years. The cause of the disease is unknown and there are no curative therapies. Patients' adaption to chronic disease is dependent on the effectiveness of coping behaviour. Objectives To explore the correlation between the quality of perceived disease information and to estimate the correspondance between the quality of perceived disease information and later coping styles applied by MS-patients in stress situations related to their disease. Methods Of a total of 108 patients recently diagnosed with MS, 93 agreed to participate in the study and 86 of these completed two different questionnaires, one assessing quality of the perceived information and the other asessing coping styles (the COPE scale). Results 43.2% of the patients were dissatisfied or very dissatisfied with the information by the time of diagnosis. MS-related coping styles were influenced by general coping styles and the most frequent...
The Health Education for Lupus Study
The American Journal of the Medical Sciences, 2012
Objective-Examine in a randomize controlled feasibility clinical trial the efficacy of a cognitive-behavioral intervention designed to manage pain, enhance disease adjustment and adaptation, and improve quality of life among female adolescents with systemic lupus erythematosus (SLE). Methods-Female adolescents (N = 53) ranging in age from 12 to 18 years were randomized to one of three groups including a cognitive-behavioral intervention, an education-only arm, and a no-contact control group. Participants were assessed at baseline, post-intervention, and at threeand six-month intervals following completion of the intervention. Results-No significant differences were revealed among the three treatment arms for any of the dependent measures at any of the assessment points. For the mediator variables, a post-hoc secondary analysis did reveal increases in coping skills from baseline to post-intervention among the participants in the cognitive-behavioral intervention group compared to both the no-contact control group and the education-only group. Conclusion-Although no differences were detected in the primary outcome, a possible effect on female SLE adolescent coping was detected in this feasibility study. Whether the impact of training in the area of coping was of sufficient magnitude to generalize to other areas of functioning, such as adjustment and adaptation, is unclear. Future Phase III randomized trials will be needed to assess additional coping models, and to evaluate the dose of training and its influence on pain management, adjustment, and health-related quality of life.
Public Health Nursing, 1992
The purpose of this study was to describe the effectiveness of a community-based health-promotion program that was collaboratively designed and that is currently being implemented by lay persons who have the diagnosis of systemic lupus erythematosus (SLE) and by health professionals. Two groups of SLE self-help course participants contributed data for this theory-guided preexperimental program impact study. Braden's self-help model provided the theoretical framework. The variables addressed were severity of illness, limitations, uncertainty, enabling skill self-efficacy, self-worth, and life quality. The groups consisted of 35 subjects having low depression scores (~7 7) and 37 with high depression scores (a272) on a measure having a possible range of scores from 0 to 400. Data were collected at three points: at the beginning of class 1, after class 7 (7 wks later), and two months after completion of the course. A group (2) by time (3) by measures (10) MANOVA analysis procedure was used with a follow up univariate F test and Newman-Keuls multiple comparison procedure. Significant change was evident for the level of depression group and for three interaction effects of group X time, group X measure, and group X time X measure. BACKGROUND Several recent definitions provide a basis for viewing health promotion as an optimum vehicle for improving the health of persons with disabilities. Goodstadt, Simpson, and Loranger (1987), Pender (1987), and Green and that places health professionals in the role of consultant,