Experiences of being treated with autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis: A qualitative interview study.

BACKGROUND: Autologous haematopoietic stem cell transplantation (AHSCT) is increasingly used as a treatment for aggressive multiple sclerosis (MS) and has the potential to induce long-term remission and resolution of disease activity. Despite the extensive research on treatment outcome after AHSCT, the experience of living with MS after AHSCT has not been previously described in the scientific literature. The aim of this study was to explore long-term lived experience of people with MS treated with AHSCT. METHODS AND FINDINGS: To exclude selection bias, all persons treated with AHSCT for MS at Uppsala University Hospital, Sweden, between 2004 and 2007 (n = 10), were asked to participate in the study, and all accepted. Open-ended interviews were conducted, digitally recorded, transcribed verbatim, and then subjected to qualitative content analysis with an inductive approach. Five main themes emerged from the interviews: (I) being diagnosed with MS-an unpredictable existence; (II) a new treatment-a possibility for a new life; (III) AHSCT-a transition; (IV) reclaiming life; and (V) a bright future accompanied by insecurity. AHSCT was described by the participants in terms of a second chance and an opportunity for a new life. The treatment became a transition from a state of illness to a state of health, enabling a previous profound uncertainty to wane and normality to be restored. Although participants of different age and sex were included, the main limitation of this study is the relatively small number of participants. Also, the inclusion of persons from one centre alone could restrict transferability of the results. CONCLUSIONS: The results give a first insight into lived experience following a highly effective induction treatment for MS, and the experience of not having MS anymore. Underpinned by previously described outcome following AHSCT, the results of this study challenge the current view on MS as a chronic disease with no possible cure.

Cerebellar ataxia and intrathecal baclofen therapy: Focus on patients´ experiences.

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.

Learning to fly with broken wings - forcing a reappraisal of time and space.

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.

Being parents with epilepsy: thoughts on its consequences and difficulties affecting their children.

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.

Feeling rejected or invited: experiences of persons seeking care advice at the Swedish Healthcare Direct organization.

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.

Thalamo-striato-cortical determinants to fatigue in multiple sclerosis.

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: MS participants with self-reported fatigue were examined by functional magnetic resonance imaging (fMRI) during the performance of a complex working memory task. In this task, cognitive effort was challenged by a parametric design, which modeled the cerebral responses at increasing cognitive demands. In order to explore the theory of central fatigue in MS we also analyzed the cerebral responses by adding perceived fatigue scores as covariates in the analysis and by calculating the functional connectivity between regions in the thalamo-striatocortical network. The main findings were that MS participants elicited altered brain responses in the thalamo-striato-cortical network, and that brain activation in the left posterior parietal cortex and the right substantia nigra was positively correlated to perceived fatigue ratings. MS participants had stronger cortical-to-cortical and subcortical-to-subcortical connections, whereas they had weaker cortical-to-subcortical connections. CONCLUSIONS: The findings of the present study indicate that the thalamo-striato-cortical network is involved in the pathophysiology of fatigue in MS, and provide support for the theory of central fatigue. However, due to the limited number of participants and the somewhat heterogeneous sample of MS participants, these results have to be regarded as tentative, though they might serve as a basis for future studies.

Work capacity and health-related quality of life among individuals with multiple sclerosis reduced by fatigue: a cross-sectional study.

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.

The impact of concordant communication in outpatient care planning - nurses' perspective.

AIM: To elucidate registered nurses' experiences of coordinated care planning in outpatient care. BACKGROUND: Coordinated care planning has been studied from the perspectives of both patients and nurses in inpatient care, but it is deficient in outpatient care. METHOD: Qualitative content analysis of interviews with 10 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 subcategories. CONCLUSIONS: Nurses need extraordinary communication skills to reach concordance in outpatient care planning. In addition to 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 consensus 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.

Suffering and suffering with the other - the perspective of perioperative nurse leaders.

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 daily tasks', '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, when questioned 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.

Self-care agency and perceived health among people using advanced medical technology at home.

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 self-care. 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.

Living with an adult family member using advanced medical technology at home.

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.

Living with epilepsy accompanied by cognitive difficulties: young adults' experiences.

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.

Sensitivity to heat in MS patients: a factor strongly influencing symptomology--an explorative survey.

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.

Health-illness transition among persons using advanced medical technology at home.

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.

Obese women's experiences of encounters with midwives and physicians during pregnancy and childbirth.

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.

Fatigue in relation to perceived health: people with multiple sclerosis compared with people in the general population.

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.

The study circle as a tool in multiple sclerosis patient education in Sweden.

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.

Reliability and validity of the Swedish version of the Fatigue Impact Scale (FIS).

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 < or = s < or = .86 (p <0.001), reflecting the instrument's reliability. The correlations between the FIS and the general questions confirm its concurrent validity, 0.27 < or = s < or = .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.

Lived experience of MS-related fatigue--a phenomenological interview study.

UNLABELLED: 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.