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Meanings of women's experiences of living with multiple sclerosis
Luleå tekniska universitet.
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of this doctoral thesis was to describe meanings of women's experiences of living with multiple sclerosis (MS). It focuses specifically on the women's experiences of daily life (I), the experience of fatigue (II), experiences of feeling well (III) and experiences of treatment (IV). Narrative interviews were conducted with 25 women living with MS and the interviews were analyzed from a phenomenological hermeneutic interpretation.For women with MS, living with an unrecognizable body meant that the deterioration of their bodies had become clear and served as a hindrance in daily life. The experience of fatigue seemed to mean that the body instead of working as an implement in order to manage daily life had become an enemy. These experiences included bodily changes, which were evident to others, and imposed feelings of being met in a different way. The ill body threatens the women's dignity and they expressed being avoided by others as hurtful. Despite the fact of all aspects of daily life are being affected by illness, the women with MS nevertheless do find ways to experience feeling well. Feeling well, for women with MS can be understood as finding a pace where daily life goes on and the illness is not the dominant experience.This thesis suggests that meanings of women's experiences of living with MS can be comprehended as a movement between the two dimensions of having a value and feeling unimportant to others. In the dimension of having a value, feeling well is brought forward, meanwhile the dimension of feeling unimportant to others, implies suffering in the daily lives of women with MS. For these women recognizing oneself as valuable and sharing an understanding are important in order to feel dignified in daily life and to experience feeling well.

Place, publisher, year, edition, pages
Luleå: Luleå tekniska universitet , 2010. , p. 69
National Category
Nursing
Research subject
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-7772ISBN: 978-91-7439-091-9 (print)OAI: oai:DiVA.org:esh-7772DiVA, id: diva2:1352624
Public defence
2010-04-23, D770, 09:00 (Swedish)
Opponent
Note

Paper IV: Olsson, M., Skär, L., & Söderberg, S. Meanings of treatment for women with multiple sclerosis. Manuscript submitted.

Available from: 2019-09-19 Created: 2019-09-19 Last updated: 2019-09-19Bibliographically approved
List of papers
1. The meaning of women's experiences of living with multiple sclerosis
Open this publication in new window or tab >>The meaning of women's experiences of living with multiple sclerosis
2008 (English)In: Health Care for Women International, ISSN 0739-9332, E-ISSN 1096-4665, Vol. 29, no 4, p. 416-430Article in journal (Refereed) Published
Abstract [en]

We conducted a qualitative inquiry in order to describe the meaning of women's experiences of living with multiple sclerosis (MS). Multiple sclerosis is a chronic autoimmune disease of the central nervous system. The majority of persons living with MS are women. Living with MS has been described as difficult because of the uncertainty of the illness. Ten women with MS were interviewed and the interviews were analyzed with a phenomenological hermeneutic interpretation. In this study, we suggest that the meaning of living with MS for women can be understood as trying to maintain power and living with an unrecognizable body. The bodies of women with MS serve as hindrances in everyday life. Bodily changes evident to others impose feelings of being met in a different way, which can be understood as an expression of a violated

National Category
Nursing
Research subject
Nursing
Identifiers
urn:nbn:se:esh:diva-7777 (URN)10.1080/07399330701876646 (DOI)000255155100007 ()18389436 (PubMedID)2-s2.0-41849096679 (Scopus ID)
Available from: 2016-09-29 Created: 2019-09-16 Last updated: 2019-09-19Bibliographically approved
2. The meaning of fatigue for women with multiple sclerosis
Open this publication in new window or tab >>The meaning of fatigue for women with multiple sclerosis
2005 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 49, no 1, p. 7-15Article in journal (Refereed) Published
Abstract [en]

AIM: This paper reports the findings of a study that aimed to elucidate the meaning of fatigue for women with multiple sclerosis (MS). BACKGROUND: Living with chronic illness can involve giving up usual activities. MS is a chronic autoimmune disease of the central nervous system. Fatigue is a common experience among people with MS; however, little is known about the meaning of fatigue experienced by women with this condition. METHOD: Ten women with MS were interviewed about their experience of fatigue. A phenomenological hermeneutic method influenced by Ricoeur was used to interpret the transcribed interviews. FINDINGS: The findings were presented in two major themes with five subthemes; experiencing the body as a barrier and experiencing a different absence. Fatigue seemed to give rise to an experience of being absent and divided into two parts. This also led to a feeling of not being able to participate in the surrounding world. The feeling of being an outsider and lacking the ability as a healthy person is interpreted as a form of suffering. Although the fatigue had a great impact on the women's daily life, the women still hoped for some relief. Fatigue seemed to imply that instead of working as an implement to manage in the world the body has become an enemy of survival. CONCLUSION: This study highlights the importance for nurses of understanding how women with MS experience fatigue, which is a prerequisite for communication based on a shared understanding. This awareness would enhance nurses' opportunities to alleviate suffering. More research is needed to investigate what kinds of interventions can help these women to manage their everyday lives and to maintain a sense of normality despite their fatigue and illness. Such interventions should be subject to empirical evaluation research.

National Category
Nursing
Research subject
Nursing
Identifiers
urn:nbn:se:esh:diva-7782 (URN)10.1111/j.1365-2648.2004.03258.x (DOI)000225952200001 ()2-s2.0-12344336322 (Scopus ID)
Available from: 2016-09-29 Created: 2019-09-16 Last updated: 2019-09-19Bibliographically approved
3. Meanings of feeling well for women with multiple sclerosis
Open this publication in new window or tab >>Meanings of feeling well for women with multiple sclerosis
2010 (English)In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 20, no 9, p. 1254-1261Article in journal (Refereed) Published
Abstract [en]

In research concerning multiple sclerosis (MS), the factors that impact on people's well-being and quality of life have been studied, but little has been written about what it means to feel well for women with MS. Therefore, in this study our aim was to describe meanings of feeling well for women with MS. We interviewed 15 women with MS, and a phenomenological hermeneutic interpretation was utilized to analyze the interviews. Through this study it can be understood that finding a pace where daily life goes on means that women with MS feel well when the illness is kept in check and is not the dominant experience. The findings of this study can be used to confirm women's experiences of feeling well, despite living with the consequences of MS. Health care professionals will find the results of this study useful when they reflect on and formulate the care of women with MS when attempting to support the latter's desire to feel well in their daily lives.

National Category
Nursing
Research subject
Nursing
Identifiers
urn:nbn:se:esh:diva-7771 (URN)10.1177/1049732310371103 (DOI)000280688100009 ()20463358 (PubMedID)2-s2.0-77955584703 (Scopus ID)
Available from: 2016-09-29 Created: 2019-09-16 Last updated: 2019-09-19Bibliographically approved

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