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  • 1.
    Berntsson, Shala Ghaderi
    et al.
    Uppsala University, Department of Neuroscience, Neurology, University Hospital, Uppsala, Sweden.
    Landtblom, Anne-Marie
    Uppsala University, Department of Neuroscience, Neurology, University Hospital, Uppsala, Sweden, Department of Clinical and Experimental Medicine, Neurology, Medical Faculty, University of Linköping, Linköping, Sweden.
    Flensner, Gullvi
    University West, Department of Health Sciences, Section for nursing - graduate level.
    Cerebellar ataxia and intrathecal baclofen therapy: Focus on patients´ experiences2017In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 2, no 6, article id e0180054Article in journal (Refereed)
    Abstract [en]

    Elucidating patients´ experiences of living with chronic progressive hereditary ataxia and the symptomatic treatment with intrathecal baclofen (ITB) is the objective of the current study. A multicenter qualitative study with four patients included due to the rare combination of hereditary ataxia and ITB therapy was designed to elucidate participants' experiences through semi-structured interviews. The transcribed text was analyzed according to content analysis guidelines. Overall we identified living in the present/ taking one day at a time as the main theme covering the following categories: 1) Uncertainty about the future as a consequence of living with a hereditary disease; The disease; 2) Impact on life as a whole, 3) Influence on personal life in terms of feeling forced to terminate employment, 4) Limiting daily activities, and 5) ITB therapy, advantages, and disadvantages. Uncertainty about the future was the category that affected participants' personal life, employment, and daily activities. The participants' experience of receiving ITB therapy was expressed in terms of improved quality of life due to better body position and movement as well as better sleep and pain relief.

  • 2. Davallius, Carl-Axel
    et al.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Hälsorelaterad information via Internet: Hinder och möjligheter för individen2006In: Vård i Norden, ISSN 0107-4083, E-ISSN 1890-4238, Vol. 26, no 4, p. 37-40Article in journal (Refereed)
    Abstract [en]

    Increasingly people use the Internet to find health-related information. However, to obtain information of good quality there may be obstacles. The aim of this literature review was to gain knowledge about use of the Internet in developing health related knowledge. Two questions were posted: What factors can be obstacles in understanding health-related information on the Internet? What effects can health related information obtained from the Internet have for the user? In a systematic search in CINAHL and Pubmed, and a systematic review of two specific journals from the years 2000 to 2004, 14 scientific articles were found. Use of the Internet is related to the individual’s age, socio-economical factors, ethnicity, and health. Information obtained from the Internet may influence the patient-caregiver relation, as well as the individual’s sense of security and independence. There are learning needs for the individual in how to use the Internet and needs for improvement of the search-engines and websites

  • 3.
    Davallius, Carl-Axel
    et al.
    NU-sjukvården, Västra Götalandsregionen.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Quality of some Swedish websites on ‘Heart attack’ assessed with the EU quality criteria2009In: Vård i Norden, ISSN 0107-4083, E-ISSN 1890-4238, Vol. 29, no 1, p. 9-13Article in journal (Refereed)
    Abstract [en]

    Aim: To evaluate quality of websites containing health information about heart attack in the Swedish language, accessible via one common used search engine available to the general public. Background: Increasingly, information about different health problems is sought on the Internet. From a layman perspective, such information can be hard to find, to understand and to trust. Health care professionals should be able to inform and teach the individual safe ways of finding health information of good quality on the Internet, which involves assessments of the websites. Methods: In one common used search engine, the Google, one search was performed during February 2006. Seventy websites were evaluated using one or all the European Union (EU) quality criteria. Findings: No website met all the criteria, but websites found on the search engines first search pages, met the criteria in the best way. Those websites were primarily aimed at mediating health information to the general public provided by government authorities, county councils, universities and companies. Conclusions: Ethnic minority groups, and individuals with low literacy skills/or visual impairments, may have difficulties finding suitable information. The EU quality criteria need to be refined in order to better assess the quality on different kind of websites.

  • 4.
    Engström, Maria
    et al.
    Linköping University, Radiology, Department of Medical and Health Sciences, .
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Landtblom, Anne-Marie
    Linköping University, Center for Medical Image Science and Visualization (CMIV).
    Ek, Anna-Christina
    Linköping University, Nursing Science, Department of Medical and Health Sciences.
    Karlsson, Thomas
    Linköping University, Center for Medical Image Science and Visualization (CMIV).
    Thalamo-striato-cortical determinants to fatigue in multiple sclerosis2013In: Brain and Behavior, ISSN 2162-3279, E-ISSN 2162-3279, Vol. 3, no 6, p. 715-728Article in journal (Refereed)
    Abstract [en]

    Background The aim was to explore the thalamo-striato-cortical theory of central fatigue in multiple sclerosis (MS) patients with self-reported fatigue. If the theory correctly predicted fatigue based on disruptions of the thalamo-striato-cortical network, we expected altered brain activation in this network in MS participants while performing a complex cognitive task that challenged fatigue. Methods

  • 5.
    Fex, Angelika
    et al.
    University West, Department of Nursing, Health and Culture, Division of Nursing.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Ek, Anna-Christina
    Linköpings universitet, Institutionen för medicin och hälsa.
    Söderhamn, Olle
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Health–illness transition among persons using advanced medical technology at home2011In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 25, no 2, p. 253-261Article in journal (Refereed)
    Abstract [en]

    This study aimed to elucidate meanings of health–illness transition experiences among adult persons using advanced medical technology at home. As an increasing number of persons perform self-care while using different sorts of advanced medical technology at home, knowledge about health–illness transition experiences in this situation may be useful to caregivers in supporting these patients. A qualitative design was used. Five women and five men, all of whom performed self-care at home, either using long-term oxygen therapy from a ventilator or oxygen cylinder, or performing peritoneal or haemodialysis, were interviewed. Ethics committee approval was obtained. Informed consent was received from all participants, and ethical issues concerning their rights in research were raised. The interviews were analysed using a phenomenological hermeneutical methodology, including both an inductive and a deductive structural analysis. This method offers possibilities to obtain an increased understanding by uncovering a deeper meaning of lived experiences through interviews transcribed as texts. The health–illness transition for adult persons in this context was found to mean a learning process of accepting, managing, adjusting and improving daily life with technology, facilitated by realizing the gain from technology at home. Further, the meaning of the health–illness transition experience was interpreted as contentment with being part of the active and conscious process towards transcending into a new state of living, in which the individual and the technology were in tune. The healthy transition experience was characterized by human growth and becoming. This study elucidates one meaning of health–illness transition experiences in relation to the use of advanced medical technology on a more generic level, independent of the specific type of technology used. A positive attitude towards technology at home facilitates the transition.

  • 6.
    Fex, Angelika
    et al.
    University West, Department of Nursing, Health and Culture, Division of Nursing.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Ek, Anna-Christina
    Linköping University, Department of Medicine and Health, Faculty of Health Sciences .
    Söderhamn, Olle
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Living with an adult family member using advanced medical technology at home2011In: Nursing Inquiry, ISSN 1320-7881, E-ISSN 1440-1800, Vol. 18, no 4, p. 336-347Article in journal (Other academic)
    Abstract [en]

    Living with an adult family member using advanced medical technology at home An increased number of chronically ill adults perform self-care while using different sorts of advanced medical technology at home. This hermeneutical study aimed to gain a deeper understanding of the meaning of living with an adult family member using advanced medical technology at home. Eleven next of kin to adults performing self-care at home, either using long-term oxygen from a cylinder or ventilator, or performing peritoneal or haemodialysis, were interviewed. The qualitative interviews were analysed using a Gadamerian methodology. The main interpretation explained the meaning as rhythmical patterns of connectedness versus separation, and of sorrow versus reconciliation. Dependence on others was shown in the need for support from healthcare professionals and significant others. In conclusion, next of kin took considerable responsibility for dependent-care. All next of kin were positive to the idea of bringing the technology home, even though their own needs receded into the background, while focusing on the best for the patient. The results were discussed in relation to dependent-care and transition, which may have an influence on the self-care of next of kin and patients. The study revealed a need for further nursing attention to next of kin in this context. 

  • 7.
    Fex, Angelika
    et al.
    University West, Department of Nursing, Health and Culture, Division of Nursing.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Ek, Anna-Christina
    Linköping University, Department of Medicine and Health, Faculty of Health Sciences.
    Söderhamn, Olle
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Self-care agency and perceived health among people using advanced medical technology at home2012In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 68, no 4, p. 806-815Article in journal (Refereed)
    Abstract [en]

    Aim.

    This article reports a study of self-care agency and perceived health in a group

    of people using advanced medical technology at home.

     

    Background.

    An increasing number of people are using medical technology for selfcare.

    Few studies describe daily life in this context at an overriding level, irrespective

    of the specific sort of technology. A connection between self-care, perceived health

    and sense of coherence has previously been implied.

     

    Methods.

    A descriptive, comparative, cross-sectional quantitative design was used.

    Data were collected from a questionnaire during the winter of 2009/2010. The

    questionnaire addressed perceived health and daily life with medical technology.

    Swedish versions of the Appraisal of Self-care Agency scale and the 13-item version

    of Antonovsky’s sense of coherence scale were included.

     

    Results.

    The questionnaire was answered by 180 adults performing self-care at

    home involving long-term oxygen, a ventilator, or peritoneal- or haemo-dialysis.

    Health-related and technology-related variables in daily life were mostly highly

    satisfactory. Perceived health was rated significantly lower among participants using

    long-term oxygen. Sufficient sense of coherence, knowledge of how to use technology,

    close contact with others and not feeling helpless contributed positively to

    self-care agency. Positive contributing factors for perceived health were being satisfied

    with life, having an active life and not feeling helpless, whereas age was a

    negative factor.

     

    Conclusion.

    Daily life is manageable for people in this context. Long-term oxygen

    treatment and advanced age can be regarded as risk factors for perceiving ill health.

  • 8.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Det vetenskapliga ämnet2014In: Att bli sjuksköterska: en introduktion till yrke och ämne / [ed] Dahlborg-Lyckhage, Elisabeth, Lund: Studentlitteratur AB, 2014, 2., p. 85-106Chapter in book (Other (popular science, discussion, etc.))
  • 9.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Det vetenskapliga ämnet2010In: Att bli sjuksköterska: en introduktion till yrke och ämne / [ed] Dahlborg Lyckhage, Elisabeth, Lund: Studentlitteratur , 2010, 1, p. 85-107Chapter in book (Other academic)
  • 10.
    Flensner, Gullvi
    University West, Department of Health Sciences, Section for nursing - graduate level.
    Det vetenskapliga ämnet2019In: Att bli sjuksköterska: en introduktion till yrke och ämne / [ed] Elisabeth Dahlborg, Lund: Studentlitteratur AB, 2019, 3., p. 103-129Chapter in book (Other academic)
  • 11.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Fatigue in individuals with multiple sclerosis: lived experiences and perceived impact in daily life2005Doctoral thesis, comprehensive summary (Other academic)
  • 12.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Vem är patienten?2014In: Att bli sjuksköterska -e: en introduktion till yrke och ämne / [ed] Dahlborg-Lyckhage, Elisabeth, Lund: Studentlitteratur , 2014, 2., p. 107-120Chapter in book (Other (popular science, discussion, etc.))
  • 13.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Vem är patienten2010In: Att bli sjuksköterska: en introduktion till yrke och ämne / [ed] Dahlborg Lyckhage, Elisabeth, Lund: Studentlitteratur , 2010, 1, p. 109-122Chapter in book (Other academic)
  • 14.
    Flensner, Gullvi
    University West, Department of Health Sciences, Section for nursing - graduate level.
    Vem är patienten?2019In: Att bli sjuksköterska: en introduktion till yrke och ämne / [ed] Elisabeth Dahlborg, Lund: Studentlitteratur AB, 2019, 3., p. 133-147Chapter in book (Other academic)
  • 15.
    Flensner, Gullvi
    et al.
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Ek, Anna-Christina
    Linköping University, Department of Medicine and Health, Faculty of Health Sciences .
    Landtblom, Anne-Marie
    Linköping University, Division of Neurology, Faculty of Health Sciences.
    Söderhamn, Olle
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Fatigue in relation to perceived health: People with multiple sclerosis compared with people in the general population2008In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 22, no 3, p. 391-400Article in journal (Refereed)
  • 16.
    Flensner, Gullvi
    et al.
    University West, Department of Nursing.
    Ek, Anna-Christina
    Linköping University, Department of Medicine and Care, Division of Nursing Science, Faculty of Health Sciences.
    Söderhamn, Olle
    University West, Department of Nursing.
    Lived experience of MS-related fatigue: a phenomenological interview study2003In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 40, no 7, p. 707-17Article in journal (Refereed)
    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.

  • 17.
    Flensner, Gullvi
    et al.
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing. University West, Department of Nursing.
    Ek, Anna-Christina
    Söderhamn, Olle
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Reliability and validity of the Swedish version of the Fatigue Impact Scale (FIS).2005In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 12, no 4, p. 170-180Article in journal (Refereed)
    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 ≤ r s ≤0.86 ( p [ABSTRACT FROM AUTHOR]

  • 18.
    Flensner, Gullvi
    et al.
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Ek, Anna-Christina
    University West, Department of Nursing, Health and Culture.
    Söderhamn, Olle
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Reply to commentary on "Reliability and validity of the Swedish version of the Fatigue Impact Scale (FIS)"2006In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 13, no 2, p. 134-Article in journal (Refereed)
  • 19.
    Flensner, Gullvi
    et al.
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Ek, Anna-Christina
    Linköping University, Department of Medicine and Health, Division of Nursing Science, Faculty of Health Sciences.
    Söderhamn, Olle
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Landtblom, Anne-Marie
    Linköping University Division of Neuroscience, Department of Clinical and Experimental Medicine, Faculty of Health Sciences.
    Sensitivity to heat in MS patients: A factor strongly influencing symptomology - an explorative survey2011In: BMC neuroscience (Online), ISSN 1471-2202, E-ISSN 1471-2202, Vol. 11, no 27Article in journal (Refereed)
    Abstract [en]

    Background: Many individuals diagnosed with Multiple Sclerosis (MS) are sensitive to increased body temperature, which has been recognized as correlating with the symptom of fatigue. The need to explore this association has been highlighted. The aim of this study was to investigate the occurrence of heat sensitivity and its relations to disease course, disability, common MS-related symptoms and ongoing immunosuppressive treatments among individuals 65 years of age or younger diagnosed with MS.Methods: A cross-sectional designed survey was undertaken. A questionnaire was sent to MS-patients with an Expanded Disability Status Score (EDSS) in the interval of 0-6.5 and who were between 20 and 65 years of age, living in an eastern region of Sweden (n = 334). Besides occurrence of heat sensitivity (Yes/No) and corresponding questions, the Fatigue Severity Scale (FSS), the MS-related symptom checklist and the Perceived Deficit Questionnaire (PDQ) were included. Data were analysed in relation to data level using Chi-square, Mann Whitney U-test, and Student's t-test. Pearson's and Spearman's correlations were calculated. In the logistic regression analyses (enter) dichotomized MS-symptoms were used as dependent variables, and EDSS, disease-course, time since onset, heat-sensitivity, age and sex (female/male) were independent variables. In the linear regression analyses, enter, mean FSS and summarized PDQ were entered as dependent variables and EDSS, disease-course, time since onset, heat sensitivity, age and sex (female/male) were independent variables.Results: Of the responding patients (n = 256), 58% reported heat sensitivity. The regression analyses revealed heat sensitivity as a significant factor relating not only to fatigue (p < 0.001), but also to several other common MS symptoms such as pain (p < 0.001), concentration difficulties (p < 0.001), and urination urgency (p = 0.009).Conclusions: Heat sensitivity in MS patients is a key symptom that is highly correlated with disabling symptoms such as fatigue, pain, concentration difficulty and urination urgency. © 2011 Flensner et al; licensee BioMed Central Ltd.

  • 20.
    Flensner, Gullvi
    et al.
    University West, Department of Nursing, Health and Culture, Divison of Caring Sciences, postgraduate level.
    Landtblom, Anne-Marie
    Linköpings Universitet.
    Söderhamn, Olle
    University West, Department of Nursing, Health and Culture, Divison of Caring Sciences, postgraduate level.
    Ek, Anna-Christina
    Linköpings Universitet.
    Work capacity and health-related quality of life among individuals with multiple sclerosis reduced by fatigue: a cross-sectional study2013In: BMC Public Health, ISSN 1471-2458, E-ISSN 1471-2458, Vol. 13, no 224, p. 1-10Article in journal (Refereed)
    Abstract [en]

    Background: Among individuals diagnosed with the chronic neurologic disease, multiple sclerosis (MS), a majority suffers from fatigue, which strongly influences their every-day-life. The aim of this study was to investigate work capacity and health-related quality of life (HRQoL) in a group of MS patients and also to investigate if work capacity and HRQoL could be predicted by background factors, fatigue, heat sensitivity, cognitive dysfunction, emotional distress or degree of disability. Methods: A descriptive, cross-sectional, designed survey was undertaken A questionnaire was sent to 323 individuals diagnosed with MS, aged between 20 and 65 years, with physical disability on the expanded disability status score (EDSS) in the interval 0 ≥ EDSS ≤ 6.5, living in Östergötland county in eastern Sweden. Questions on background factors, occupation and work, together with the health-related quality of life short form instrument (SF-36), the fatigue severity scale (FSS), the perceived deficit questionnaire (PDQ) and the hospital anxiety depression scale (HAD) were posed. Associations between variables were analyzed using Pearson’s and Spearman’s correlations. Differences between groups were tested using the Chi-square test, the Mann Whitney U-test, and the Student’s t-test. Predictive factors were analyzed using multiple linear and multiple logistic regression analysis. Results: Of those who completed the questionnaire (n = 257, 79.6%), 59.8% were working. Work capacity was found significantly more among men (p < 0.005), those with a higher level of education (p < 0.001), those reporting less fatigue (p < 0.001), and those having no heat sensitivity (p = 0.004). For work capacity, significant predictors were low physical disability (EDSS), low fatigue, higher level of education, male sex and lower age. Those with work capacity showed significantly higher HRQoL than those who had no work capacity (p < 0.001). Levels of fatigue, cognition and emotional distress were found to be major contributing factors for HRQoL. Conclusions: Work capacity and HRQoL among individuals diagnosed with MS are highly influenced by fatigue which can be considered as a key symptom. Work capacity was influenced by heat-sensitivity, cognitive difficulties and emotional distress and significant predictive factors besides fatigue, were physical disability (EDSS), age, sex, and level of education. Remaining at work also gives a better HRQoL.

  • 21.
    Flensner, Gullvi
    et al.
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Lindencrona, Catharina
    The cooling-suit: a study of ten multiple sclerosis patients’ experiences in daily life1999In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 29, no 6, p. 1444-1453Article in journal (Refereed)
    Abstract [en]

    The cooling-suit: a study of ten multiple sclerosis patients’ experiences in daily life Approximately 60%–80% of all multiple sclerosis (MS) patients are heat sensitive. The aim of this study was to gain information on the effects of an assistive device, the cooling-suit, on MS-patients’ self-care ability and also practical implications. A single-case approach was adopted in a quasi- experimental before-and-after study. The cooling-suit was used in their own homes by 10 individuals with diagnosed MS in different stages from relapsing–remitting to chronic progressive. Data collection procedures were self-assessment through a structured assessment-instrument, an open-ended interview before and after the intervention and a diary written during one week. The selected instrument, the MS Self-Care ADL Scale, has been developed for persons with MS and was translated into Swedish. The results showed increased self-care ability during and after use of the cooling-suit. However, different aspects of daily life activities were improved and to a varying extent. It is concluded that the study participants were supported and empowered in different activities of daily life such as walking and transfer and reduced voiding problems by using the cooling-suit. Some difficulties in handling the cooling-suit were also reported. [ABSTRACT FROM AUTHOR]

  • 22.
    Flensner, Gullvi
    et al.
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Lindencrona, Catharina
    The National Board of Health and Welfare, Stockholm.
    The cooling-suit: case studies of its influence on fatigue among eight individuals with multiple sclerosis.2002In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 37, no 6, p. 541-50Article in journal (Refereed)
    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.

  • 23.
    Flensner, Gullvi
    et al.
    University West, Department of Health Sciences, Section for nursing - graduate level.
    Rudolfsson, Gudrun
    University West, Department of Health Sciences, Section for nursing - graduate level. Nord University, Faculty of Nursing and Health Sciences, Bodø, Norge.
    A pathway towards reconciliation and wellbeing: A spouse's experiences of living with a partner diagnosed with early-onset dementia2018In: Nordisk sygeplejeforskning, ISSN 1892-2678, E-ISSN 1892-2686, Vol. 8, no 02, p. 136-149Article in journal (Refereed)
    Abstract [en]

    When someone falls ill with dementia it affects the whole family. Therefore, the aim of thisqualitative single case study was to increase understanding of one female spouse´s experiencesof living with a husband/partner diagnosed with early-onset dementia before the ageof 40 years. Two open-ended interviews with the female spouse were performed sixmonths apart and analysed for narrative structure and themes. The single case is describedin the form of a story and organised along a time line comprising four phases; «Somethingis wrong», «Becoming aware of what is wrong», «Life is restricted» and «Towards reconciliation».Healthcare professionals should meet spouses with respect, listen to them and providepractical support, thus giving them the opportunity to rest, obtain respite and time ontheir own to enable reconciliation and wellbeing.

  • 24.
    Flensner, Gullvi
    et al.
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Rudolfsson, Gudrun
    University West, Department of Nursing, Health and Culture, Divison of Caring Sciences, postgraduate level.
    Learning to fly with broken wings - forcing a reappraisal of time and space.2016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 2, p. 403-410Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: When living with a chronic disease, the whole human being is affected and his/her experience of health challenged.AIM: This study had a dual aim: to obtain a new understanding of experiences of the body among persons suffering from the chronic neurological disease multiple sclerosis (MS) and how they come to terms with such experiences.

    METHOD: A total of ten interviews were re-analysed using a hermeneutic approach.

    RESULTS: The experiences of the body were revealed as 'Learning to fly with broken wings', comprising two themes: 'Getting to know the foreign body' and 'Building a new living space', both requiring reappraisal of time and space.

    CONCLUSION: Living with a chronic disease such as MS means learning to fly with broken wings, which involves subordination to the body leading to a higher level of integration in the process of becoming towards health and well-being.

  • 25.
    Gauffin, Helena
    et al.
    Linköping University, Department of Neurology and Department of Clinical and Experimental Medicine, Linköping, Sweden.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Landtblom, Anne-Marie
    Uppsala University, Department of Neuroscience, Uppsala, Sweden.
    Being parents with epilepsy: thoughts on its consequences and difficulties affecting their children2015In: Neuropsychiatric Disease and Treatment, ISSN 1176-6328, E-ISSN 1178-2021, Vol. 11, p. 1291-1298, article id NDT.S74222Article in journal (Refereed)
    Abstract [en]

    Objective: Parents with epilepsy can be concerned about the consequences of epilepsy affecting their children. The aim of this paper is to describe aspects of what it means being a parent having epilepsy, focusing the parents’ perspectives and their thoughts on having children.

    Methods:

    Fourteen adults aged 18–35 years with epilepsy and subjective memory decline took part in focus-group interviews. The interviews were conducted according to a semi-structured guideline. Material containing aspects of parenthood was extracted from the original interviews and a secondary analysis was done according to a content-analysis guideline. Interviews with two parents for the Swedish book Leva med epilepsi [To live with epilepsy] by AM Landtblom (Stockholm: Bilda ide; 2009) were analyzed according to the same method.

    Results:

    Four themes emerged: (1) a persistent feeling of insecurity, since a seizure can occur at any time and the child could be hurt; (2) a feeling of inadequacy – of not being able to take full responsibility for one’s child; (3) acknowledgment that one’s children are forced to take more responsibility than other children do; and (4) a feeling of guilt – of not being able to fulfill one’s expectations of being the parent one would like to be.

    Conclusion:

    The parents with epilepsy are deeply concerned about how epilepsy affects the lives of their children. These parents are always aware that a seizure may occur and reflect on how this can affect their child. They try to foresee possible dangerous situations and prevent them. These parents were sad that they could not always take full responsibility for their child and could not live up to their own expectations of parenthood. Supportive programs may be of importance since fear for the safety of the child increases the psychosocial burden of epilepsy. There were also a few parents who did not acknowledge the safety issue of their child – the authors believe that it is important to identify these parents and provide extra information and support to them.

  • 26.
    Gauffin, Helena
    et al.
    Division of Neurology, Medical Faculty/IKE, Linköping University, Sweden.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Landtblom, Anne-Marie
    Division of Neurology, Medical Faculty/IKE, Linköping University, Sweden.
    Living with epilepsy accompanied by cognitive difficulties: Young adults’ experiences2011In: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 22, no 4, p. 750-758Article in journal (Refereed)
    Abstract [en]

    Objective

    Epilepsy can sometimes be followed by memory impairment. This can result from the underlying cause of epilepsy or from recurrent seizures, or can be a side effect of antiepileptic drugs or a symptom of another disease such as depression. The aim of the study described here was to explore the experience of living with epilepsy and subjective cognitive decline.

    Method

    To better understand the deeper meaning of the phenomenon, a qualitative design was chosen. Fourteen adults aged 18–35 took part in focus group interviews. The participants were divided into four groups, two groups of women and two groups of men, and the interviews were conducted according to a semistructured protocol. Transcripts were analyzed in accordance with the content analysis guidelines.

    Results

    Four themes emerged: “affecting the whole person,” “influencing daily life,” “affecting relationships,” and “meeting ignorance in society.”

    Conclusions

    Cognitive decline has a heavy impact on young adults with intractable epilepsy. In contrast to seizures, the cognitive decline is persistent. The themes reflected different hardships faced by the participants. The consequences of living with epilepsy and cognitive impairment concerned education, employment, social life, self-esteem, and hope for the future. The participants were already using strategies to cope with their cognitive decline, but may benefit from help in developing new strategies to better adjust to their memory problems. Development of more educational programs for both people with epilepsy and their relatives could improve their difficult situations. With help, people can learn to adjust their goals in life and live a fulfilling life despite the disease.

    Highlights

    ► Cognitive decline has a heavy impact on young adults with intractable epilepsy. ► It has consequences for employment, social life, self-esteem, and future plans. ► Participants employed many strategies to cope with their cognitive decline. ► Young people with epilepsy would benefit from help to better adjust to memory problems.

  • 27.
    Gustafsson, Erika
    et al.
    NU Hospital Group, Department of Institutional Forensic Psychiatric Care, Vänersborg.
    Holm, Maritha
    NU Hospital Group, Department of Institutional Forensic Psychiatric Care, Vänersborg.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Rehabilitation between institutional and non-institutional forensic psychiatric care: important influences on the transition process.2012In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 19, p. 729-737Article in journal (Refereed)
    Abstract [en]

    ACCESSIBLE SUMMARY: •  All patients cared for in Forensic Psychiatric Care (FPC) have some kind of psychiatric disorder and most of them have committed one or more criminal acts. In addition, several of the patients have alcohol and drug problems. •  During the stay in institutional FPC, one part of the rehabilitation program is to prepare the patient for non-institutional FPC. However, several patients fail with the rehabilitation. •  This study focuses important aspects that influence the patients' ability to manage their rehabilitation through admission to non-institutional FPC, viewed from different caregivers' perspective. •  The transition is influenced by a well-planned care plan, together with a suitable non-institutional dwelling and a tailored occupation. A major barrier for successful admission was whether the patients managed their own finances or not. Other important areas were having a well-functioning and trusting social network and a good relationship with a contact person. ABSTRACT: All patients cared for in forensic psychiatric care (FPC) have some kind of psychiatric disorder and most of them have committed one or more criminal acts. One part of the patient's rehabilitation is the transition from institutional to non-institutional FPC, but a number of patients do not succeed. The aim of this study was to elucidate different caregivers' experiences of aspects that influence the patients' ability to manage this rehabilitation. A qualitative approach was chosen. Data were collected by interviews in two focus groups, each group comprising of six caregivers representing both institutional and non-institutional FPC. The transcribed interviews were analysed using a qualitative content analysis. Important aspects influencing the patients' transition described were a well-planned care plan, together with a suitable non-institutional dwelling and a tailored occupation. Other important areas were having a well-functioning and trusting social network and a good relationship with a contact person/advocate. A major barrier to a successful transition was whether the patients managed their own finances or not. It was stated that it is important that the patients participate in the care and that different authorities create individual conditions and flexible solutions. All of these factors are important to focus on when caring for patients during their stay in the institutional FPC.

  • 28. Landtblom, Anne-Marie
    et al.
    Lang, Cecilia
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    The study circle as a tool in education of multiplesclerosis patients in Sweden2008In: Patient Preference and Adherence, ISSN 1177-889X, Vol. 2, no 2, p. 225-232Article in journal (Refereed)
    Abstract [en]

    Objective: Patient education plays an important role in the management of chronic diseases that can cause disability and predictable psychosocial problems. Quality of life assessment in multiple sclerosis (MS) has confirmed that psychosocial complications related to working life, marriage/partnership, and the family often occur. Furthermore, symptoms such as fatigue, pain, and sexual dysfunction have a great impact. We wanted to develop and implement study circles to promote the patients’ abilities to meet such common problems and to provide a network where they can be autonomous and develop appropriate strategies in self-care and existential problems.

    Methods: Together with the MS patient organization and a study association, we have arranged study circles for patients with MS, thus providing structured information according to a pedagogic model. The patients are encouraged to work together in groups to learn about the disease and its key symptoms, to develop strategies to master these symptoms in everyday life, and to make necessary changes, ie, self-care management. The programme also contains handicap policies.

    Results: Fifteen study circles with a total of 105 patients started during the first year. Fifteen circle leaders were approved. A focus interview showed that the patients are highly satisfied but also revealed some problems in interactions with health care professionals. The study circles were included in a wider project from a newly started multidisciplinary centre for health education for a variety of chronic diseases causing disability, which aims at becoming a regional interface between the health care system, patient organizations, and educational services.

    Conclusion: The study circles have an important role to play in the management of MS. Good organization is required to make such a project work since health care services do not normally work so closely with patient organizations and educational services.

    Practice implications: Study circles that are permanently established and function well are of great help for the patients and the work at the MS clinic is substantially facilitated. Health care professionals also gain from the arrangement by learning more about the self-perceived impact of the disease.

  • 29.
    Nyman, Viola M K
    et al.
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Prebensen, Asa K
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Flensner, Gullvi E M
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Obese women's experiences of encounters with midwives and physicians during pregnancy and childbirth.2010In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 26, no 4, p. 424-429Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: to describe obese women's experiences of encounters with midwives and physicians during pregnancy and childbirth. DESIGN: a qualitative study using a phenomenological approach. Data were collected by means of interviews that were tape-recorded. SETTING: the women's homes or at a hospital in western Sweden. PARTICIPANTS: 10 women with body mass index >30, three primiparous and seven multiparous, who had given birth at a hospital in western Sweden in the period between October 2006 and September 2007 were interviewed four to six weeks after childbirth. FINDINGS: the meaning of being both obese and pregnant is living with a constant awareness of the body, and its constant exposure to the close observation and scrutiny of others. It involves negative emotions and experiences of discomfort. Feelings of discomfort increase as a result of humiliating treatment, whilst affirmative encounters alleviate discomfort and provide a sense of wellbeing. CONCLUSION AND IMPLICATIONS FOR PRACTICE: obese pregnant women are a vulnerable group because obesity is highly visible. Caregivers tend to focus on providing care to obese patients somatically, but are additionally in need of knowledge about care from the woman's point of view. Many obese women have negative experiences of health care that they have to overcome. It is necessary to individualise care for obese pregnant women, which involves taking time to give the women an opportunity to tell their own story. Caregivers have to promote health but it has to be done honestly and respectfully. In order to avoid judgemental attitudes and causing increased suffering for obese pregnant women, midwives and physicians need to be conscious of, reflect upon and verbalise their own attitudes and power.

  • 30.
    Olsson, Maivor
    et al.
    University West, Department of Nursing, Health and Culture, Divison of Caring Sciences, postgraduate level.
    Larsson, Lena
    University West, Department of Nursing, Health and Culture, Divison of Caring Sciences, postgraduate level.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing. University West, Department of Health Sciences, Section for nursing - graduate level.
    Bäck-Pettersson, Siv
    Department of Research and Development, NU-hospital Organization.
    The impact of concordant communication in outpatient care planning: nurses' perspective2012In: Journal of Nursing Management, ISSN 0966-0429, E-ISSN 1365-2834, Vol. 20, p. 748-757Article in journal (Refereed)
    Abstract [en]

    Aim: To elucidate nurses’ (RNs) experiences of co-ordinated care planning in outpatient care. Background: Co-ordinated care planning has been studied from the perspectives of both patients and nurses in inpatient care, but it is missing in outpatient care.

    Method: Qualitative content analysis of interviews with ten registered nurses participating in two focus groups.

    Results: An overall theme was identified: creating concordant communication in relation to patient and health-care providers. The result is based on four categories and nine sub-categories.

    Conclusions: Nurses need extraordinary communication skills to reach concordance in outpatient care planning. Apart from involving and supporting the patients and next of kin in the decision-making process, the outcome of the nursing process must be understood by colleagues and members of other professions and health-care providers (non-nursing).

    Implications for nursing management: An effective outpatient care-planning process requires that care managers understand the impact of communicating, transferring information and reaching agreement with other health-care providers, actively supporting employees in the outpatient care-planning process and contributing to the development of common goals and policy documents across organisational boundaries.

  • 31.
    Rudolfsson, Gudrun
    et al.
    University West, Department of Health Sciences, Section for nursing - graduate level.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture.
    Suffering and suffering with the other: the perspective of perioperative nurse leaders2012In: Journal of Nursing Management, ISSN 0966-0429, E-ISSN 1365-2834, Vol. 20, no 2, p. 278-286Article in journal (Refereed)
    Abstract [en]

    Aim To capture and interpret meanings of suffering from the perspective of perioperative nurse leaders.Background There are few studies focusing on suffering and the meaning of being a nurse leader in a perioperative context.Method Hermeneutic interpretation of interviews with nurse leaders.Results A main theme of suffering emerged as learning and non-learning. Suffering as learning comprised struggling to come to terms with being misunderstood, struggling to wait patiently to be allowed to help, struggling to manage daily tasks and struggling to be worthy of the trust of superiors. Suffering as non-learning comprised feeling alone when in charge, feeling guilty about not managing dailytasks, feeling mistrusted by superiors, feeling unfairly criticized,  feeling humiliated owing to loss of responsibilities and feeling unable to help. Conclusion Suffering is good when the mission of caring is mastered and the nurse leader feels recognized as unique and trustable, leading to his or her sense of dignity being preserved. Suffering is evil when the mission of caring is threatened, whenquestioned and not considered a unique and trustable person, leading to loss of dignity.Implications for nursing management Nurse leaders suffering needs to be acknowledged and a caring culture that permeates the entire organization should be developed.

  • 32.
    Smedman, Anna
    et al.
    Lidköpings kommun.
    Gustafsson, Kerstin
    Lidköpings kommun.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Att vårda äldre personer på särskilt boende under livets slutskede: Undersköterskornas perspektiv2015In: Nordisk sygeplejeforskning, ISSN 1892-2678, E-ISSN 1892-2686, Vol. 5, no 2, p. 79-92Article in journal (Refereed)
    Abstract [en]

    In Sweden, reforms in health and social care for older people were impplemented in 1992 (Ädelreformen) and provided older people with the opportunity to be cared for in their own homes, under the responsibility of the local municipality. Most of the older people choose to live in their own home or in sheltered housing, a so-called special housing, for rest of their lives and are able to recieve extensive nursing care, including palliative care. Thus, palliative care has shifted from care at hospitals to care in own homes or special housing, which has increased the demands placed on nursing staff. The aim of this study was to elucidate the meanings the nursing staff expressed as regards caring for older persons in special housing in a palliative stage. Qualitative interviews with eight assistant nurses were performed. The inter-views were recorded, transcribed verbatim and analysed using qualitative content analysis. To care for an old person in the palliative stage means  "Caring for a friend", "Creating a calm and peaceful death", "Giving support to relatives" and "Alternating between feelings of powerlessness and satisfaction". When an old person died, the assistant nurse mourned him or her as the would a friend. Amongst the colleguages, the assistant nurses experienced a sense of security, which meant openness and the courage to discuss and reflect upon their feelings, both during the care and after the death. Despite this there was a need for more time to grieve after the death.

  • 33.
    Winneby, Ewa
    et al.
    SHD, FyrBoDal, Uddevalla.
    Flensner, Gullvi
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Rudolfsson, Gudrun
    University West, Department of Nursing, Health and Culture, Divison of Caring Sciences, postgraduate level.
    Feeling rejected or invited: Experiences of persons seeking care advice at the Swedish Healthcare Direct organization2014In: Japan Journal of Nursing Science, ISSN 1742-7932, Vol. 11, no 2, p. 87-93Article in journal (Refereed)
    Abstract [en]

    Aim Swedish Healthcare Direct is an organization staffed by registered nurses who act as telenurses and assess callers’ need for care, taking both medical and personal aspects into account. They direct the care seeker to: emergency care (level I), a care center on duty (level II), their regular doctor (level III), or provide advice about self-care strategies (level IV). In this assessment process, the nurse and care seeker should reach mutual agreement. The aim and focus of the present study was to elucidate the care seeker’s situation and experiences of the care received after being triaged and directed to level II, although the telenurse in fact assessed their medical problems as corresponding to level III. Methods A total of eight recent Swedish Healthcare Direct users were interviewed in this qualitative study. Data were analyzed by means of content analysis. Results Three themes emerged – “feeling trapped”, “feeling disrespected”, and “feeling invited” – comprising seven subthemes. Conclusion Care seekers experienced suffering as well as struggling to be allowed to be a patient. When not met by an ethically correct stance, they continued to seek care. In contrast, when they encountered commitment and an ethically correct attitude, their health process began and they had no further need for contact.

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