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Fatigue in individuals with multiple sclerosis: lived experiences and perceived impact in daily life
Linköping University, Department of Medicine and Care, Nursing Science. Linköping University, Faculty of Health Sciences.
2005 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to gain knowledge about experiences of fatigue among individuals diagnosed with MS and to compare these experiences with those of individuals in the general population. Individuals' experiences of fatigue have been approached both inductively and deductively and qualitative and quantitative research methods have been combined. A total of 372 individuals participated in the studies: 178 individuals diagnosed with MS (I-IV), and 194 individuals randomly selected from the general population. These individuals functioned as reference group and were comparable with the MS sufferers as regards age and sex (III-IV).

Experiences of fatigue were investigated before-and-after an intervention with a cooling suit among eight individuals diagnosed with MS (I). Fatigue as lived through and its perceived meaning were addressed in a phenomenological interview study among nine individuals with MS (II). Reliability and validity of a tool to assess impact of fatigue in daily life, the Swedish version of the Fatigue Impact Scale (FIS), was investigated in a cross-sectional study among 161 individuals with MS in comparison with 194 individuals in the general population (III). Further, experiences of fatigue, in terms of its perceived impact in daily life in relation to perceived health was addressed in a study which comprised 155 individuals diagnosed with MS who were compared with 190 individuals from the general population (IV).

The collection of data included open interviews conducted before-and-after the intervention (I) and in the phenomenological study (II). A self-written semi-structured oneweek diary was completed during the test-period with the cooling suit (I). Perceived impact of fatigue in daily life was assessed in a self-assessment questionnaire, with the FIS (I, III, IV) and a symptom list (IV) included. The individuals' perceived health was addressed by means of a single rating-question (IV).

Living with fatigue means living with a time-consuming and an all-absorbing phenomenon, which is both non-constructively and constructively perceived and involves either the whole body or parts of it (II). Experiences of fatigue were reduced during the intervention period. Overall levels of fatigue, in terms of its duration and perceived severity, and also its perceived impact in daily life, were reported diminished and the participants reported a sense of well-being and contentment during the period (I). Among the individuals with MS, fatigue was regarded as one of, or as their worst symptom. The experience of fatigue was more than three times as frequent as among the individuals in the general population. In MS, the perceived impact of fatigue in daily life was not found to be related either to age or numbers of years of being diagnosed with MS, but it was with the indicated levels of perceived health (IV). Among individuals diagnosed with MS, the FIS was found to be a reliable and valid tool measuring impact of fatigue in daily life. Also in the reference group comprising individuals in the general population, the FIS captured and distinguished between different levels of the impact of fatigue (III).

Place, publisher, year, edition, pages
Linköping: Linköping Universitet , 2005. , 63 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 917
Keyword [en]
action-theory, cooling, daily life, fatigue, perceived health, phenomenology, scale testing
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-31911Local ID: 17744ISBN: 91-85299-31-6 (print)OAI: oai:DiVA.org:liu-31911DiVA: diva2:252734
Public defence
2005-11-18, Berzeliussalen, Hälsouniversitetet, Linköping, 09:00 (Swedish)
Opponent
Available from: 2009-10-09 Created: 2009-10-09 Last updated: 2012-09-27Bibliographically approved
List of papers
1. The cooling-suit: case studies of its influence on fatigue among eight individuals with multiple sclerosis
Open this publication in new window or tab >>The cooling-suit: case studies of its influence on fatigue among eight individuals with multiple sclerosis
2002 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 37, no 6, 541-550 p.Article in journal (Refereed) Published
Abstract [en]

Aim of the study. To study if the use of a cooling-suit by individuals with multiple sclerosis (MS) influenced their experience of fatigue and consequent restrictions in daily life.

Background.  The majority of MS patients consider fatigue as one of their most disabling symptoms and as having a significant impact on their daily lives. Fatigue often increases in a warm environment. A cooling-suit has been reported as a practical method of cooling, but the effect on fatigue has not yet been studied.

Research methods.  Eight individuals used a cooling-suit in their own homes during a test-period. In a single case–control design, their experience of fatigue was studied before and after. Quantitative and qualitative methods were used: self-assessments using the Fatigue Impact Scale (FIS), open-ended interviews and semi-structured diaries.

Results.  All study participants reported a reduction in fatigue during the test period. On the FIS, they scored reductions in the physical, cognitive and psycho-social dimensions of daily life. They experienced fatigue less often and for shorter periods. In their diaries and interviews they described decreased muscular strain, less sense of fatigue in relation to intake of food and positive effects on cognitive, social or affective problems related to fatigue.

Discussion.  The cooling-suit is a practical method for cooling. It gives freedom and flexibility and can be used regardless of setting. Nurses who meet heat-sensitive individuals with MS have the opportunity to give information on cooling methods, including how to use a cooling-suit. In this pilot study we found that individuals with MS who suffered from fatigue reported a number of improvements in quality of daily life.

Conclusions.  The result indicates that use of a cooling-suit by individuals with MS may decrease their sense of fatigue. In this sample positive outcomes on daily life situations were reported. Further studies are needed to support these results.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-26887 (URN)10.1046/j.1365-2648.2002.02129.x (DOI)11511 (Local ID)11511 (Archive number)11511 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
2. Lived experience of MS-related fatigue: a phenomenological interview study
Open this publication in new window or tab >>Lived experience of MS-related fatigue: a phenomenological interview study
2003 (English)In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 40, no 7, 707-717 p.Article in journal (Refereed) Published
Abstract [en]

Fatigue is a major problem among individuals diagnosed with multiple sclerosis (MS), but its meaning in daily living is unclear. The aim was to describe MS-related fatigue as lived by a group of individuals diagnosed with MS. Interviews with nine individuals were analysed from a phenomenological perspective.

Main findings: MS-related fatigue is living with a time-consuming and all absorbing phenomenon, involving the body and the whole human being. Fatigue is commonly non-constructively perceived and expressed in terms of energy loss, emotional afflictions, dependency and restrictions of life in general, however, it is also constructively perceived and involves a desire to accept life and strive for a better situation.

Conclusion: MS-related fatigue is a comprehensive phenomenon and its relationship with self-care requires further investigation.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-26876 (URN)10.1016/S0020-7489(03)00010-5 (DOI)11497 (Local ID)11497 (Archive number)11497 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
3. Reliability and validity of the Swedish version of the Fatigue Impact Scale (FIS)
Open this publication in new window or tab >>Reliability and validity of the Swedish version of the Fatigue Impact Scale (FIS)
2005 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 12, no 4, 170-180 p.Article in journal (Refereed) Published
Abstract [en]

Fatigue is a complex phenomenon that, for those not affected, is hard to understand. To achieve better assessments, caregivers need reliable and valid tools. The aim of this study was to investigate the reliability and validity of the Swedish version of the Fatigue Impact Scale (FIS) among working-aged individuals diagnosed with multiple sclerosis (MS), as well as in a comparative group randomly selected from the general population in the same geographical area. Both individuals with MS (n=161) and individuals recruited from the general population (n=194) participated in the study. A questionnaire was used for the data collection. The data were analysed using non-parametric statistical methods. Reliability of FIS was addressed by item-to-item and item-to-total correlations. Concurrent validity was tested for by analysing correlations between the FIS and general questions, and construct validity by investigation of differences in the FIS scores between known groups. The FIS was found to be homogenous, with item-to-total correlation coefficients of 0.42 ≤ rs≤0.86 (p<0.001), reflecting the instrument's reliability. The correlations between the FIS and the general questions confirm its concurrent validity, 0.27 ≤ rs≤0.84 (p<0.001). The differences in FIS scores between known groups demonstrate its construct validity. Furthermore, the FIS showed the ability to discriminate between groups of individuals with differences in perceived impact of fatigue.

Keyword
Activity, assessment tool, caring, daily life, energy, multiple sclerosis, self-report
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-32347 (URN)10.1080/11038120510031806 (DOI)18241 (Local ID)18241 (Archive number)18241 (OAI)
Available from: 2009-10-09 Created: 2009-10-09 Last updated: 2017-12-13Bibliographically approved
4. Fatigue in relation to perceived health: people with multiple sclerosis compared with people in the general population
Open this publication in new window or tab >>Fatigue in relation to perceived health: people with multiple sclerosis compared with people in the general population
2008 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 22, no 3, 391-400 p.Article in journal (Refereed) Published
Abstract [en]

Fatigue is not only a complex phenomenon accompanying different illness conditions but is also a common complaint among individuals in the general population. Among individuals diagnosed with the chronic neurological disease multiple sclerosis (MS), one-third describe fatigue as the very first symptom, however it is invisible to others. When adopting an action-theoretic approach to health, fatigue may be considered to influence the individual’s goals of life and subjectively perceived health. The aim of this study was to describe perceived fatigue in relation to perceived health among working-aged individuals diagnosed with MS (n = 155), and in a comparative group of individuals randomly selected from the general population living in the same geographical area (n = 190). A self-report questionnaire including the Fatigue Impact Scale, a checklist of six symptoms, questions covering perceived health and levels of and perceptions of fatigue was used for the data collection. The responses on perceived health were dichotomized into two categories: ‘good health’ and ‘ill health’. Of the individuals with MS, 50% graded their perceived health as ill compared with 18% in the reference group (p < 0.001), and 68% graded fatigue as one of their worst symptoms compared with 21% in the reference group. In both groups, higher presence of symptoms and impact of fatigue in daily activities correlated negatively to perceived health. Compared with the individuals in the reference group, the individuals with MS reported higher impact of fatigue in physical areas in both the category of ‘good health’ (p < 0.001) and ‘ill health’ (p < 0.01). The perceived impact of fatigue was mirrored in increased problems in social and family activities. In conclusion, individuals with MS perceive fatigue as one of their worst symptoms three times as often as individuals in the general population. However, individuals with MS probably also adapt themselves or shift in their response to fatigue more than individuals in the general population.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-43147 (URN)10.1111/j.1471-6712.2007.00542.x (DOI)72082 (Local ID)72082 (Archive number)72082 (OAI)
Available from: 2009-10-10 Created: 2009-10-10 Last updated: 2017-12-13Bibliographically approved

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