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- Isaksson, Ann-Kristin
(författare)
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Chronic sorrow and quality of life in patients with multiple sclerosis
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to increase our understanding and knowledge of patients’ experiences of living with multiple sclerosis (MS). A mixed-method design was used, including both qualitative and quantitative methods. Thirty-one immunologically treated MS patients were randomly selected and matched with patients without immunological treatment. Matching criteria were gender, impairment, time since diagnosis and age. One patient dropped out and therefore the final sample consisted of 61 patients. All 61 were interviewed (Studies I, III and IV) and completed the 36-item Short Form health survey questionnaire (SF-36), the Subjective estimation of Quality of Life questionnaire (SQoL), the Self-reported Impairment Check-list (SIC) (Study II) and the Montgomery–Asberg Depression Rating Scale questionnaire (MADRS) (Study III). The interviews were subjected to content analysis. Initial symptoms and being diagnosed with MS were described in terms of becoming vulnerable and remaining in that vulnerability long after the diagnosis. Eventually the patients were able to manage this emotional distress and acquired strength in their illness situation (Study I). In the matched analysis, 29 pairs of patients were included after internal drop-out. There were no statistically significant differences between the treatment and control groups. Concerning the total group of 61 patients, the self-reported impairment check-list showed that they had various problems of impairment, most evident in balance and walking. The score on health-related quality of life (SF-36) was reduced, disclosing a negative influence on vitality, physical role and function. However, subjective quality of life (SQoL) was not reduced, showing that the patients estimated their well-being to be quite unaffected (Study II). Thirty-eight of the 61 patients (62%) experienced chronic sorrow (Study III). The group were not depressed in general, only four having mild symptoms of depression, revealing that chronic sorrow is a particular form of emotional distress in MS. Chronic sorrow was experienced in terms of loss of hope, loss of control over the body and loss of integrity and dignity. When the patients could not adequately manage their sorrow and lacked support, they were struggling with their vulnerability. In the successful management of MS, losses and emotional distress are managed in such a way as to enhance personal growth, appreciation and trust in life. The theoretical model of chronic sorrow facilitated the sorting of the empirical data and the linking of these data to theory, showing the usefulness of the model (Study IV).
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| 2. |
- Nilsagård, Ylva, 1964-
(författare)
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Walking ability, balance and accidental falls in persons with Multiple Sclerosis
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- By using a pragmatic paradigm, different research methodologies were employed in this thesis. MS-related symptoms may be exaggerated due to heatsensitivity and it is supposed that cooling garments relieve the symptoms. The effects of wearing a Rehband® vest were evaluated in a sample of 42 persons with MS in a randomised controlled crossover study. Both objective and subjective statistically significant improvements were found when a cooled Rehband® vest was worn compared to the wearing of a room-tempered vest. Using a repeated-measures design, 10m and 30m timed walks and Timed Up and Go were studied in 42 persons with MS. Reproducibility was investigated within and between test points. High reproducibility was found both within (r=0.97–0.98) and between measure points (r=0.91–0.93). The correlation between the three tests was high (r=0.85). Differences at –23% to +40% were established as being needed to detect genuine changes. Severity of MS infl uenced the size of the differences, especially for the 30m timed walk test. The 12-item MS Walking Scale was translated and used in a cross-sectional study. Out of 81 persons with MS, 89–96% perceived limitations in standing or walking. The internal consistency of the scale was acceptable for nine items (0.69–0.84). The concurrent validity between the 12-item MS Walking Scale and the investigated objective tests was low: Berg Balance Scale (r=–0.368**), Four Square Step Test (r=0.338**) and Timed Up and Gocognitive (r=0.319*). A prevalence of falling was found at 63% in a longitudinal cohort study with prospectively registered falls including 76 persons with MS. The odds of falling were fi ve fold when there was a reported need of using a walking aid indoors and outdoors and by 2.5 to 15.6 times while there was disturbed proprioception, depending on severity. The highest sensitivity was found for the Berg Balance Scale (94%) and the highest specifi city was found for the 12-item MS Walking Scale (82%). Positive predictive values at 70–83% were found for the Berg Balance Scale, Timed Up and Gocognitive, the Four Square Step Test and the 12-item MS Walking Scale. Finally, we explored and described factors that persons with MS perceive as related to accidental falls. A content analysis with a deductive approach was chosen. By conducting interviews, we found previously untargeted factors: divided attention, reduced muscular endurance, fatigue and heat-sensitivity. The content of the interviews also gave support to previously reported risk factors such as changes in gait pattern, walking disability, impaired proprioception and vision, and spasticity.
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