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  • 1.
    Eilertsen, Grethe
    et al.
    Norge.
    Ormstad, Heidi
    Norge.
    Kirkevold, Marit
    Norge.
    Mengshoel, Anne Marit
    Norge.
    Söderberg, Siv
    Luleå tekniska universitet.
    Olsson, Malin
    Luleå tekniska universitet.
    Similarities and differences in the experience of fatigue among people living with fibromyalgia, multiple sclerosis, ankylosing spondylitis and stroke2015In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 24, no 13-14, p. 2023-2034Article in journal (Refereed)
    Abstract [en]

    Aims and objectivesTo elucidate the experience of fatigue across several long-term illnesses, focusing on the similarities and differences.BackgroundFatigue is common to many long-term illnesses, but it has been studied mainly within the context of a single illness; qualitative studies comparing the experience and its impact on daily life across different long-term illnesses are lacking.DesignQualitative design.MethodsA secondary analysis was conducted of five original interview studies involving 95 persons with ankylosing spondylitis, fibromyalgia, multiple sclerosis or stroke.ResultsSimilarities and differences concerning experiences of fatigue were found across the studied long-term illnesses. All patients expressed the perception of having an unfamiliar body. Fatigue was also commonly expressed as unpredictable, uncontrollable and invisible to others. Differences were related to a constant versus a varying condition, a sudden and an uncontrollable sleepiness, a mutual reinforcement with pain and increased stress sensitivity. A lack of energy and a need for sleep and rest were common experiences, as was the impact on social relationships. There were also similarities regarding how the patients managed their daily life. The search for practical solutions and attitude adjustment differed with the fatigue characteristics. All patients felt a lack of understanding and disbelief from others.Conclusion and relevance to clinical practiceFatigue is commonly expressed by patients with long-term illnesses. Variations in experience are related to the type of diagnosis. The disparity between experiences influences how patients managed and adjusted to the conditions of everyday life. The illness-specific characteristics of fatigue warrant increased clinical awareness and may allow professionals to offer adequate information and establish effective methods of managing the condition. The feeling of invisibility and difficulty describing the experience of fatigue in particular highlights this need.

  • 2.
    Juuso, Päivi
    et al.
    Luleå tekniska universitet.
    Skär, Lisa
    Luleå tekniska universitet.
    Olsson, Malin
    Luleå tekniska universitet.
    Söderberg, Siv
    Luleå tekniska universitet.
    Living with a double burden: Meanings of pain for women with fibromyalgia2011In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 6, no 3Article in journal (Refereed)
    Abstract [en]

    Living with fibromyalgia (FM) means living with a chronic pain condition that greatly influences daily life. The majority of people with FM are middle-aged women. The aim of this study was to elucidate meanings of pain for women with FM. Fifteen women with FM were interviewed about their pain experiences and a phenomenological hermeneutic interpretation was used to analyse the interview texts. The findings show that meanings of pain for women with FM can be understood as living with a double burden; living with an aggressive, unpredictable pain and being doubted by others in relation to the invisible pain. The ever-present pain was described as unbearable, overwhelming, and dominated the women’s whole existence. Nevertheless, all the women tried to normalize life by doing daily chores in an attempt to alleviate the pain. In order to support the women’s needs and help them to feel well despite their pain, it is important that nurses and health care personnel acknowledge and understand women with FM and their pain experiences.

  • 3.
    Juuso, Päivi
    et al.
    Luleå tekniska universitet.
    Skär, Lisa
    Luleå tekniska universitet.
    Olsson, Malin
    Luleå tekniska universitet.
    Söderberg, Siv
    Luleå tekniska universitet.
    Meanings of being received and met by others as experienced by women with fibromyalgia2014In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 24, no 10, p. 1381-1390Article in journal (Refereed)
    Abstract [en]

    Fibromyalgia (FM) is a common chronic pain syndrome that mostly affects middle-aged women. Our aim with this study was to elucidate meanings of being received and met by others as experienced by women with FM. Interviews with a narrative approach were conducted with 9 women. We analyzed the transcribed interviews with a phenomenological hermeneutical interpretation. The findings revealed two themes: being seen as a malingerer and being acknowledged. Meanings of being received and met by others, as experienced by women with FM, can be understood as a movement between the two perspectives. When they were acknowledged, their feelings of security and trust increased, but the women could not rely on this because others received and met them in such an unpredictable manner.

  • 4.
    Juuso, Päivi
    et al.
    Luleå tekniska universitet.
    Skär, Lisa
    Luleå tekniska universitet.
    Olsson, Malin
    Luleå tekniska universitet.
    Söderberg, Siv
    Luleå tekniska universitet.
    Meanings of feeling well for women with fibromyalgia2013In: Health Care for Women International, ISSN 0739-9332, E-ISSN 1096-4665, Vol. 34, no 8, p. 694-706Article in journal (Refereed)
    Abstract [en]

    The researchers focus in this study was to elucidate meanings of feeling well for women with fibromyalgia (FM). We obtained narrative interviews with thirteen women with FM and used a phenomenological-hermeneutic interpretation to analyse the interview texts. Our interpretation of the findings show that for women with FM meanings of feeling well can be understood as having strength to be involved. The women's experiences of feeling well meant being in control, having power, finding one's own pace and feelings of belonging.

  • 5.
    Juuso, Päivi
    et al.
    Luleå tekniska universitet.
    Söderberg, Siv
    Luleå tekniska universitet.
    Olsson, Malin
    Luleå tekniska universitet.
    Skär, Lisa
    Luleå tekniska universitet.
    The significance of Associations for women with FM2014In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 21, p. 1755-1761Article in journal (Refereed)
    Abstract [en]

    Purpose: Living with fibromyalgia (FM) means living with a long-term pain syndrome that is invisible to others. Support and understanding from others seem to be important to managing the affected daily life. The aim of this study was to describe the significance of FM associations for women with FM. Methods: Data collection was carried out through focus group discussions with seventeen women with FM. Data were analyzed through thematic content analysis. Results: The findings show that women experienced associations for people with FM as important as they gave access to contacts with others with similar experiences. Their need of togetherness was fulfilled at the association and they described being strengthened by the support received. Because of the lack of information and knowledge about FM, the association was described as an important venue for getting and mediating information about the illness. Conclusions: At the association the women seem to be empowered, which increases their ability to manage their daily lives despite the limitations imposed by FM. Healthcare personnel could not satisfy the women’s needs and to manage to support women with FM. There is a need for communication based on a shared understanding between the women and healthcare personnel.Implications for Rehabilitation Read More: http://informahealthcare.com/eprint/hxrQu88eIVBPKf48aBpd/full

  • 6.
    Olsson, Malin
    et al.
    Luleå tekniska universitet.
    Lexell, Jan
    Luleå tekniska universitet.
    Söderberg, Siv
    Luleå tekniska universitet.
    The meaning of fatigue for women with multiple sclerosis2005In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 49, no 1, p. 7-15Article in journal (Refereed)
    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.

  • 7.
    Olsson, Malin
    et al.
    Luleå tekniska universitet.
    Lexell, Jan
    Luleå tekniska universitet.
    Söderberg, Siv
    Luleå tekniska universitet.
    The meaning of women's experiences of living with multiple sclerosis2008In: Health Care for Women International, ISSN 0739-9332, E-ISSN 1096-4665, Vol. 29, no 4, p. 416-430Article in journal (Refereed)
    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

  • 8.
    Olsson, Malin
    et al.
    Luleå tekniska universitet.
    Skär, Lisa
    Luleå tekniska universitet.
    Söderberg, Siv
    Luleå tekniska universitet.
    Meanings of being received and met by others as experienced by women with MS2011In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 6, no 1, p. 57-69Article in journal (Refereed)
  • 9.
    Olsson, Malin
    et al.
    Luleå tekniska universitet.
    Skär, Lisa
    Luleå tekniska universitet.
    Söderberg, Siv
    Luleå tekniska universitet.
    Meanings of feeling well for women with multiple sclerosis2010In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 20, no 9, p. 1254-1261Article in journal (Refereed)
    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.

  • 10.
    Olsson, Malin
    et al.
    Luleå tekniska universitet.
    Stafström, Lena
    Region Norrbotten.
    Söderberg, Siv
    Luleå tekniska universitet.
    Meanings of fatigue for women with Parkinson’s disease2013In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 23, no 6, p. 741-748Article in journal (Refereed)
    Abstract [en]

    The existing knowledge of women’s experiences of living with Parkinson’s disease and fatigue is limited. To gain first-hand knowledge, we interviewed 11 women using a phenomenological hermeneutic interpretation. The results indicate that the familiar daily routines of women with Parkinson’s disease had changed in the sense that their bodily attachment to the world had been altered. The body no longer provided smooth access to the surrounding world; rather, the body served as a barrier to daily living. In practice, understanding this barrier can be significant in recognizing how to create positive conditions that support the women’s experiences and how to formulate their care in congruence with their needs.

  • 11.
    Olsson, Malin
    et al.
    Luleå tekniska universitet.
    Söderberg, Siv
    Luleå tekniska universitet.
    Meanings of fatigue among women with multiple sclerosis2011Conference paper (Other academic)
  • 12.
    Söderberg, Siv
    et al.
    Luleå tekniska universitet.
    Olsson, Malin
    Luleå tekniska universitet.
    Skär, Lisa
    Luleå tekniska universitet.
    A hidden kind of suffering: female patient’s complaints to Patient’s Advisory Committee2012In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 1, p. 144-150Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe female patients' experiences of dissatisfaction with healthcare. People who have been treated with dignity during healthcare encounters are more prone to report better adherence to treatment and higher satisfaction with their care. Good quality care is commonly described as individualized and related to individual needs. This study has a qualitative approach, as the aim was to describe female patients' experiences of dissatisfaction with healthcare from a first person perspective. A purposive sample of fourteen women was interviewed about their experiences of dissatisfaction with healthcare. The interviews were subjected to a qualitative content analysis. The findings show that the women were treated with indifference when they were being withheld information, felt distrusted, and when they were treated badly they did not receive an apology. The findings also show that the women experienced that they did not feel safe when they had no one liable to turn to within the healthcare when the encounter did not correspond to the women's needs and expectations. The women's experiences of being withheld explanations can be seen as a violation of their dignity and a hidden suffering from care. In conclusion, the study shows the importance of receiving a personal explanation after filing a complaint about healthcare and recommends that clinics that receive a complaint from a patient should contact that patient and provide an individualized explanation

  • 13.
    Zotterman, Anna Nygren
    et al.
    Luleå tekniska universitet.
    Skär, Lisa
    Luleå tekniska universitet.
    Olsson, Malin
    Luleå tekniska universitet.
    Söderberg, Siv
    Luleå tekniska universitet.
    District nurses' views on quality of primary healthcare encounters2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 3, p. 418-425Article in journal (Refereed)
    Abstract [en]

    Good encounters are fundamental for good and professional nursing care, and can be described as treating patients with respect and protecting their integrity and autonomy. This study describes district nurses' views on quality of healthcare encounters in primary healthcare. A purposive sample of 27 district nurses participated in five focus group interviews. The focus groups interviews were digitally recorded and transcribed verbatim. The interview texts were analysed using a thematic content analysis. The analysis resulted in four themes, including being aware of the importance and difficulties during encounters, being the patient's advocate, being attentive to the unique person and being informed when a meeting turned out poorly. The results show that district nurses believed that encounters formed the basis of their work and it was vital for them to be aware of any difficulties. District nurses found that acting in a professional manner during encounters is the most significant factor, but this type of interaction was sometimes difficult because of stress and lack of time. The district nurses considered themselves to be the patients' advocate in the healthcare system; in addition, the acts of seeing, listening, believing and treating the patient seriously were important for providing good quality care. If a poor encounter occurred between the district nurse and the patient, the district nurses found that it was necessary to arrange a meeting to properly communicate what problems arose during the interaction. The district nurses highlighted that providing an apology and explanation could improve future encounters and establish a better nurse–patient relationship. In conclusion, this study shows the importance of confirming and respecting patients' dignity as the fundamental basis for a good quality encounter in primary healthcare

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