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Chronic sorrow and quality of life in patients with multiple sclerosis

<p>Isaksson, A-K. 2007 Chronic sorrow and quality of life in patients with multiple</p><p>sclerosis. Written in English with a Swedish summary. Örebro Studies in Caring</p><p>Sciences 12. Pp.85.</p><p>The overall aim of this thesis was to increase our understanding and knowledge of</p><p>patients’ experiences of living with multiple sclerosis (MS). A mixed-method design was used, including both qualitative and quantitative methods. Thirty-one</p><p>immunologically treated MS patients were randomly selected and matched with</p><p>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.</p><p>Initial symptoms and being diagnosed with MS were described in terms of</p><p>becoming vulnerable and remaining in that vulnerability long after the diagnosis.</p><p>Eventually the patients were able to manage this emotional distress and acquired</p><p>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</p><p>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).</p><p>Key words: 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.</p><p>Ann-Kristin Isaksson, Department of Health Sciences, Örebro University,</p><p>SE-701 82 Örebro, Sweden. E-mail: ann-kristin.isaksson@hi.oru.se</p>

Identiferoai:union.ndltd.org:UPSALLA/oai:DiVA.org:oru-846
Date January 2007
CreatorsIsaksson, Ann-Kristin
PublisherÖrebro University, Department of Health Sciences, Örebro : Örebro universitetsbibliotek
Source SetsDiVA Archive at Upsalla University
LanguageEnglish
Detected LanguageEnglish
TypeDoctoral thesis, comprehensive summary, text
RelationÖrebro Studies in Caring Sciences, 1652-1153 ; 1652-1153

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