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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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 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.

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.

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.

The cooling-suit: case studies of its influence on fatigue among eight individuals with multiple sclerosis.

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.