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From symptom to diagnosis: illness experiences of multiple sclerosis patients
Örebro University, Department of Health Sciences.
Örebro University, Department of Health Sciences.
2006 (English)In: Journal of Neuroscience Nursing, ISSN 1945-2810, Vol. 38, no 4, 229-237 p.Article in journal (Refereed) Published
Abstract [en]

This interview study describes 61 multiple sclerosis (MS) patients' conceptions of the disease before they were diagnosed and their experiences of the initial symptoms and the diagnosis. Qualitative content analysis was applied. The patients' perception of MS was in most cases disablement and death, but some narrated a more nuanced image of MS. The experiences of the initial symptoms and the diagnosis were stressful. The patients became and remained vulnerable through diagnosis. They managed the situation in a variety of ways to acquire strength. Nurses who encounter MS patients require specialized knowledge to understand the vulnerability of these patients and to provide support.

Place, publisher, year, edition, pages
2006. Vol. 38, no 4, 229-237 p.
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-11947PubMedID: 16924998OAI: oai:DiVA.org:oru-11947DiVA: diva2:353943
Available from: 2010-09-29 Created: 2010-09-29 Last updated: 2017-10-17Bibliographically approved
In thesis
1. Chronic sorrow and quality of life in patients with multiple sclerosis
Open this publication in new window or tab >>Chronic sorrow and quality of life in patients with multiple sclerosis
2007 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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).

Place, publisher, year, edition, pages
Örebro: Örebro universitetsbibliotek, 2007. 84 p.
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 12
Keyword
Multiple sclerosis, illness experience, diagnosis experience, impairment, health-related quality of life, subjective quality of life, immunological treatment, chronic sorrow, depression, managing chronic illness, content analysis, well-being
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-846 (URN)91-7668-521-7 (ISBN)
Public defence
2007-02-09, Aulan, Universitetsbiblioteket, Fakultetsgatan 1, Örebro, 13:00
Opponent
Supervisors
Available from: 2007-01-19 Created: 2007-01-19 Last updated: 2017-10-18Bibliographically approved

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Isaksson, Ann-KristinAhlström, Gerd

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