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  • 1.
    Björk, Tabita
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ahlström, Gerd
    The patient’s perception of having recovered from an eating disorder2008In: Health Care for Women International, ISSN 0739-9332, E-ISSN 1096-4665, Vol. 29, no 8-9, p. 926-944Article in journal (Refereed)
    Abstract [en]

    Our aim in this study was to describe how patients perceive having recovered from eating disorders. A qualitative method with a phenomenographic approach was used to identify various ways of experiencing recovery. Four categories emerged, describing how the subjects now relate in a relaxed and accepting manner to food, the body, themselves as individuals, and their social environment. Some perceived recovery as coping with emotions, while others experienced themselves as healthier than people in general regarding food and weight. Different aspects were emphasized as important for recovery. As long as patients perceive themselves as recovered, it is not necessary that they fulfill all conceivable criteria for recovery.

  • 2.
    Boström, Katrin
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Ahlström, Gerd
    Örebro University, Department of Nursing and Caring Sciences.
    Living with a chronic deteriorating disease: the trajectory with muscular dystrophy over ten years2004In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 26, no 23, p. 1388-1398Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim of the study was to elucidate experiences of living with muscular dystrophy in terms of consequences for activity over 10 years. Methods: The study population was identified in a prevalence study in a county of Sweden. Forty-six persons of this cohort with MD were interviewed. A qualitative research approach was chosen. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) was used for categorization. Results: Nearly all the subjects experienced a deterioration of physical capacity. Most obvious were the restrictions on mobility and increased fatigue and feebleness. The persons described psychosocial consequences of the muscular dystrophy as well as stigma when the disability had become more obvious. In spite of reported distress several persons experienced better psychological adaptation over time. The image of the future was often dark but several focus on today and avoid thoughts about the future. ICF showed some limitation with regard to temporal aspects, emotions and the subjective perspective. Conclusions: The knowledge of the trajectory with MD is important in order to offer the best possible treatment and support. Repeated assessment by ICF can serve as a valuable source of such knowledge, and a development of the classification would increase its usefulness in future analysis of functioning and disability.

  • 3.
    Boström, Katrin
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Ahlström, Gerd
    Örebro University, Department of Nursing and Caring Sciences.
    Living with a hereditary disease: persons with muscular dystrophy and their next of kin2005In: American Journal of Medical Genetics, ISSN 0148-7299, E-ISSN 1096-8628, Vol. 136A, no 1, p. 17-24Article in journal (Refereed)
    Abstract [en]

    This qualitative study describes conceptions and experiences of the hereditary aspect of muscular dystrophy (MD) from both the patients' and the next of kin's perspective. Different diagnoses of MD are included: dystrophia myotonica, myopathia distalis tarda hereditaria, Becker MD, facioscapulohumeral MD, limb-girdle MD, Emery-Dreifuss and undetermined proximal MD (Duchenne MD is not included). Interviews were conducted with 46 persons with MD and 36 next of kin. The interviews were subjected to inductive content analysis. Only two in each group did not spontaneously mention anything related to the fact that MD is disease with dominant or recessive inheritance. It was found that heredity has a prominent place in the thoughts and feelings of the family. These thoughts were classified as Becoming aware of MD and its hereditary nature, looking into the pedigree, acquiring an understanding of MD, thoughts about genetic testing, interpreting the risk, whether to have children or not, feelings related to the future, and feelings of responsibility and guilt. Families with MD need medical information and the opportunity for genetic testing as well as support and counseling in coming to terms with living with a hereditary disease, whether or not that includes a decision to take a test.

  • 4.
    Boström, Katrin
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Ahlström, Gerd
    Örebro University, Department of Nursing and Caring Sciences.
    Sunvisson, Helena
    Örebro University, Department of Nursing and Caring Sciences.
    Being kin of an adult person with muscular dystrophyManuscript (preprint) (Other academic)
  • 5.
    Boström, Katrin
    et al.
    Örebro University, Department of Health Sciences.
    Ahlström, Gerd
    Örebro University, Department of Health Sciences.
    Sunvisson, Helena
    Örebro University, Department of Health Sciences.
    Being the next of kin of an adult person with muscular dystrophy2006In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 15, no 2, p. 86-104Article in journal (Refereed)
    Abstract [en]

    A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

  • 6.
    Boström, Katrin
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Sjöquist Nätterlund, Birgitta
    Örebro University, Department of Nursing and Caring Sciences.
    Ahlström, Gerd
    Örebro University, Department of Nursing and Caring Sciences.
    Sickness impact in people with muscular dystrophy: a longitudinal study over 10 years2005In: Clinical Rehabilitation, ISSN 0269-2155, E-ISSN 1477-0873, Vol. 19, no 6, p. 686-694Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To describe changes of function in terms of sickness impact over 10 years in adult patients with different types of muscular dystrophy. DESIGN: Patients with muscular dystrophy answered the Sickness Impact Profile and Self-report ADL questionnaires in 1991 and 2001. SETTING: The study population was identified in a comprehensive prevalence study in the county of Orebro, Sweden. SUBJECTS: The study group comprised 44 people grouped according to whether they had myotonic dystrophy or muscular dystrophy with proximal or distal muscles affected. MAIN MEASURES: Comparison was made between assessments of sickness impact in terms of function at the two time points. RESULTS: Most obvious deterioration over time was in activities of daily living that require finger and arm strength. Ambulation was significantly decreased in myotonic dystrophy and proximal muscular dystrophy. Those walking without assistive devices decreased from 91% to 52%, and the number with a disability pension increased from 36 to 55%. There was a relatively small influence with regard to psychosocial dysfunction assessed by the Sickness Impact Profile. CONCLUSIONS: This longitudinal study shows the deteriorating functions reported by patients with muscular dystrophy. This knowledge could be used to formulate new interventions in order to offer appropriate support and treatment to this patient group.

  • 7.
    Edvardsson, Tanja
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ahlström, Gerd
    Being the next of kin of a person with a low-grade glioma2008In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 17, no 6, p. 584-591Article in journal (Refereed)
    Abstract [en]

    There is a paucity of knowledge for health-care professionals who come into contact with next of kin of persons diagnosed with low-grade gliomas. Therefore, the aim of this study was to explore the experience of being the next of kin of an adult person diagnosed with a low-grade glioma. Twenty-eight next of kin of persons with a low-grade glioma were interviewed. The data were subjected to qualitative content analysis. A quantitative data analysis was added to explore how the themes from the qualitative analysis occurred among different next of kin. Four main themes emerged: Extremely stressful emotions, Being invisible and neglected, Changed relations and roles, and Enabling strength in everyday life. The first of these occurred mainly in the early period of illness. This theme was especially predominant in the case of the patient's parents. The theme of Changed relations and roles occurred more often among next of kin some years after the person's diagnosis. The most statements occurred in all four themes were by female next of kin. Many next of kin requested emotional support for themselves and indicated that it is important that health-care staff should not forget them.

  • 8.
    Edvardsson, Tanja I.
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ahlström, Gerd I.
    Subjective quality of life in persons with low-grade glioma and their next of kin2009In: International Journal of Rehabilitation Research, ISSN 0342-5282, E-ISSN 1473-5660, Vol. 32, no 1, p. 64-70Article in journal (Refereed)
    Abstract [en]

    Patients with low-grade glioma have a longer survival than patients with highly malignant glioma, and for this reason questions of quality of life (QoL) are of particular importance to such patients as well as to their next of kin. No studies have been found in which both adult patients with low-grade glioma and their next of kin have estimated their own QoL. This study was therefore designed to investigate the subjective QoL of these two groups. Thirty-nine patients with low-grade glioma selected from a well-defined county population and 27 next of kin participated in the study. The questionnaire used in the study was the subjective estimation of QoL. The main results and conclusions are as follows: the variable absence of work/meaningful occupation showed statistically significant lower ratings among patients than among next of kin. The results show significant influence mainly on the patients' and their next of kin's internal psychological condition; related to background variables but the pattern in the results was inconsistent. There is a need for recurrent rehabilitation during this long-term disease, and a need to give vocational rehabilitation to support the patient's desire to have a meaningful occupation. It is also of importance to include the patient's next of kin when offering rehabilitation.

  • 9.
    Forsberg, Anette
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ahlström, Gerd
    Widén Holmqvist, Lotta
    Falling ill with Guillain-Barré syndrome: patients' experiences during the initial phase2008In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 22, no 2, p. 220-226Article in journal (Refereed)
    Abstract [en]

    Objective: Research describing the personal experiences of Guillain-Barré syndrome (GBS) is limited, but is important for identifying the patients' need of support. The aim of this study was to describe experiences of falling ill with GBS, with the focus on the onset of disease, the diagnosis and the illness progress during hospital care.

    Methods: The study included 35 persons, 20–78 years old. They were interviewed 2 years after the onset of GBS. The interviews were analysed using qualitative content analysis.

    Results: The onset was described as either an incomprehensible, prolonged, increasing deterioration with puzzling sensations or as a frightening, rapid onset with a sudden loss of body control. The majority of the persons relied heavily on the reassurance of a positive prognosis, and expressed immense confidence in being able to recover. During the early phase at the hospital, a rapid and steady course of improvement inspired hope in many persons. In contrast, even in this early phase of hospital care some individuals expressed doubts of a slow recovery. Feelings of fear and insecurity were evident when losing body functions, thus causing helplessness. Sensations of pain, numbness and lost body image increased their vulnerability. Half of the ventilator-treated persons expressed vivid memories of scary hallucinations.

    Conclusion: The onset is characterized by an incomprehensible bodily deterioration or a frightening, rapid paralysis. In the initial phase, there is hope for recovery, which for many individuals is reinforced by a steady recovery. In contrast, early psychosocial support may be necessary for some persons with an alarmingly slow recovery. 

  • 10.
    Forsberg, Anette
    et al.
    Örebro University Hospital. Division of Neurology, Karolinska Institutet, Stockholm, Sweden; Family Medicine Research Centre, Örebro County Council, Örebro, Sweden.
    Widén-Holmqvist, Lotta
    Division of Neurology, Karolinska Institutet, Stockholm, Sweden; Division of Physiotherapy, Karolinska Institutet, Stockholm, Sweden.
    Ahlström, Gerd
    Department of Health Sciences, Lund University, Lund, Sweden.
    Balancing everyday life two years after falling ill with Guillain-Barre syndrome: a qualitative study2015In: Clinical Rehabilitation, ISSN 0269-2155, E-ISSN 1477-0873, Vol. 29, no 6, p. 601-610Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim was to describe experiences of disability in everyday life and managing the recovery process two years after falling ill with Guillain-Barré syndrome.

    Design: Qualitative interview study.

    Methods: Interviews were conducted with 35 persons (22 male, mean age 50 years) two years after the onset of Guillain-Barré syndrome. The interviews were transcribed verbatim and analysed using content analysis.

    Results: The analysis revealed four categories and an overall theme: ‘Striving for balance in everyday life’. The participants described persistent lived body restrictions that affected their arms, legs, and face. Bodily symptoms and loss of energy limited or restricted many everyday activities. In connection with healthcare, both satisfaction and feeling vulnerable in a critical situation were described. Experiences of the recovery process varied. The participants described acceptance and reappraisal of a new life situation despite their limitations, and having gained the knowledge that life can change suddenly. However, they also expressed disappointment following an overly positive prognosis in the early stages, and over a continuous wait for recovery. For some participants life had returned to as before.

    Conclusion: The participants experienced limitations in everyday life and decreased functioning in several parts of the body. The recovery process may still be ongoing two years after onset. Rehabilitation intervention with an extended focus on supporting individualized coping processes could facilitate ways to live with persistent disability.

  • 11.
    Gustafsson, Margareta
    et al.
    Örebro University, Department of Health Sciences.
    Ahlström, Gerd
    Centre for Nursing Research, Örebro University Hospital, Box 1324, Örebro, Sweden.
    Emotional distress and coping in the early stage of recovery following acute traumatic hand injury: a questionnaire survey2006In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 43, no 5, p. 557-565Article in journal (Refereed)
    Abstract [en]

    Background: Emotional distress is frequent in patients with acute traumatic hand injury during the first weeks after the accident. Knowledge of coping in relation to emotional distress could help to identify those who need support.

    Objectives: To describe the different kinds of coping used by patients in the early stage of recovery following an acute traumatic hand injury and to investigate differences in coping patterns in patients with and without symptoms of emotional distress.

    Design: Questionnaire survey with a descriptive and comparative design. Setting/participants: A total of 112 patients with acute traumatic hand injury requiring inpatient treatment at the hand surgical clinic. Those with injuries caused by a suicide attempt or with known drug abuse were excluded. Method/main outcome measures: The patients answered a postal questionnaire at home 1-2 weeks after the accident. Emotional distress was assessed with the Hospital Anxiety and Depression scale. Coping was measured with the Jalowiec Coping Scale-40.

    Results: Coping by "trying to keep the situation under control" and "trying to look at the problems objectively and see all sides" were most frequent. These strategies are typical for the confrontive coping style, which dominated in the actual illness-situation. Symptoms of emotional distress occurred in 32% of the patients. These patients used significantly more kinds of coping strategies and used confrontive and emotive coping strategies more often than the others. Coping by "hoping for improvement", "working tension off with physical activity", "trying to put the problem out of one's mind", "worrying", "getting nervous or angry" and "taking off by one self" were associated with emotional distress. Coping by "accepting the situation as it is" and "thinking that it is nothing to worry about" were more frequent in patients without emotional distress.

    Conclusions: Observations of the coping strategies associated with emotional distress in this study could help to identify patients in clinical practice that need nursing support. Coping associated with less emotional distress should be encouraged.

  • 12.
    Gustafsson, Margareta
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Ahlström, Gerd
    Örebro University, Department of Nursing and Caring Sciences. Centre for Nursing Research,Örebro University Hospital,Örebro, Sweden.
    Problems experienced during the first year of an acute traumatic hand injury: a prospective sudy2004In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 13, no 8, p. 986-995Article in journal (Refereed)
    Abstract [en]

    Background. Evidence-based nursing of patients with acute traumatic hand injuries treated at the hand-surgical clinic calls for knowledge about long-term implications. Aims and objectives. The aim of the study was to investigate consequences of an acute traumatic hand injury during the first year after the accident. Specifically, the objectives were to investigate changes in the experience of physical and psychological problems over time, frequencies of remaining problems and the impact of the injury on work situation and life situation 1 year after the accident.

    Design. The study was prospective and followed the patients from the first weeks to 1 year after the accident. Method. Ninety-one patients were assessed three times during the year. Each time the patients answered study-specific questions, the Impact of Event Scale and the Hospital Anxiety and Depression Scale.

    Results. Problems experienced decreased during the first 3 months but tended to remain unchanged during the rest of the year. In the 1-year follow-up, the majority of the patients experienced slight or moderate functional limitations in the hand, onethird had symptoms of trauma-related distress and one out of seven had troublesome pain. Half of the patients who had returned to work reported a worse work situation and 16% were still on the sick list. One-third of all patients considered their whole life situation to be worse as a result of the injury. Patients with amputations more often experienced a worse life situation. Blue-collar workers reported functional limitations and a worse life situation more often than white-collar workers.

    Conclusions. Patients with acute traumatic hand injuries requiring surgical treatment may experience problems, such as functional limitations, trauma-related distress and troublesome pain, with long-term implications for their work situation and life situation. Relevance to clinical practice. Caring for hand-injured patients should include, not only surgical treatment and other actions for restoring the function of the hand, but also preventive action and follow-up of trauma-related distress and pain.

  • 13.
    Gustafsson, Margareta
    et al.
    Örebro University, Department of Nursing and Caring Sciences. Department of Hand Surgery, O.rebro University Hospital, Örebro, Sweden.
    Amilon, Anders
    Örebro University Hospital.
    Ahlström, Gerd
    Örebro University, Department of Nursing and Caring Sciences.
    Trauma-related distress and mood disorders in the early stage of an acute traumatic hand injury2003In: Journal of Hand Surgery - British and European Volume, ISSN 0266-7681, E-ISSN 1532-2211, Vol. 28B, no 4, p. 332-338Article in journal (Refereed)
    Abstract [en]

    The aim of the study was to estimate the incidence of trauma-related distress and mood disorders in the early stages after acute traumatic hand injuries and identify characteristics associated with these reactions. Data were obtained from 112 patients by means of mailed questionnaires and medical records. Nearly half of the patients had increased levels of intrusive and avoidance symptoms, indicating trauma-related distress. One-third showed signs of a mood disorder. Mood disorders were associated with the need for help with activities of daily living, pain and avoidance symptoms. The study showed that emotional problems in the early stages after injury are related to the consequences of both the injury and the traumatic experience. Negative reactions to the sight of the hand were associated with both trauma-related distress and mood disorders, suggesting that observation of the reactions to the sight of the hand could help to identify patients in need of psychological support.

  • 14.
    Gustafsson, Margareta
    et al.
    Centre for Assessment of Medical Technology in Örebro, KFC, Örebro University Hospital, Örebro, Sweden.
    Edvardsson, Tanja
    Ahlström, Gerd
    Örebro University, Department of Health Sciences.
    The relationship between function, quality of life and coping in patients with low-grade gliomas2006In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 14, no 12, p. 1205-1212Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: The principal aim of the study was to describe function, quality of life and coping with illness-related problems in patients with low-grade gliomas (LGG), to evaluate the need of support. A second aim was to investigate how function, quality of life and coping were related.

    MATERIALS AND METHODS: Thirty-nine patients with a diagnosis of LGG answered the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC-QLQ-C30) and the Ways of Coping Questionnaire (WCQ). The patients' level of function was assessed in accordance with the WHO performance status scale.

    RESULTS AND DISCUSSION: Nearly all patients were capable of self-care, but less than half were able to carry out normal activities without restriction. Problems with fatigue, sleep disturbances and pain were most frequent. Most difficulties were reported in the domains, Role, Cognitive and Emotional functioning. Seventeen patients (45%) had scores indicating low overall quality of life. Ratings of overall quality of life and fatigue had the strongest relationship. The trend in the results suggested that mental problems have a stronger impact on quality of life than physical ones. Emotion-focused coping dominated. There was a significant relationship between coping by escape-avoidance and lower level of emotional functioning.

    CONCLUSIONS: The results of this study indicate that a multidisciplinary team is needed for assessment and treatment of the different problems in patients with LGG. Furthermore, special attention should be paid to patients who use coping by escape-avoidance, as this is associated with emotional distress.

  • 15.
    Hägglund, Doris
    et al.
    Örebro University, Department of Clinical Medicine.
    Ahlström, Gerd
    Örebro University.
    The meaning of women's experience of living with long-term urinary incontinence is powerless2009Conference paper (Refereed)
  • 16.
    Isaksson, Ann-Kristin
    et al.
    Örebro University, Department of Health Sciences.
    Ahlström, Gerd
    Örebro University, Department of Health Sciences.
    From symptom to diagnosis: illness experiences of multiple sclerosis patients2006In: Journal of Neuroscience Nursing, ISSN 1945-2810, Vol. 38, no 4, p. 229-237Article in journal (Refereed)
    Abstract [en]

    This interview study describes 61 multiple sclerosis (MS) patients' conceptions of the disease before they were diagnosed and their experiences of the initial symptoms and the diagnosis. Qualitative content analysis was applied. The patients' perception of MS was in most cases disablement and death, but some narrated a more nuanced image of MS. The experiences of the initial symptoms and the diagnosis were stressful. The patients became and remained vulnerable through diagnosis. They managed the situation in a variety of ways to acquire strength. Nurses who encounter MS patients require specialized knowledge to understand the vulnerability of these patients and to provide support.

  • 17.
    Isaksson, Ann-Kristin
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ahlström, Gerd
    Managing chronic sorrow: experiences of patients with multiple sclerosis2008In: Journal of Neuroscience Nursing, ISSN 1945-2810, Vol. 40, no 3, p. 180-191Article in journal (Refereed)
    Abstract [en]

    The goals of this study were to describe the ways in which patients with multiple sclerosis (MS) manage chronic sorrow and to apply this information to the theoretical model of chronic sorrow. This descriptive study involved 38 participants with MS who were experiencing chronic sorrow. Using the theoretical model of chronic sorrow, we applied content analysis to participants' accounts of how they attempted to manage this sorrow. The findings showed that discomfort resulted from ineffective management of chronic sorrow, reflecting the vulnerability these patients experience and the lack of understanding of their needs and appropriate support from family, friends, and healthcare personnel. In some cases, however, the losses and emotional distress caused by MS were managed effectively, which led to increased comfort through personal growth and a greater appreciation of life, greater confidence, and hope for the future. The theoretical model was valuable in helping to describe participants' patterns of managing chronic sorrow. Healthcare personnel should acknowledge chronic sorrow as one aspect of psychological distress in MS. Knowledge of patients' experiences of chronic sorrow should be included in the education for neuroscience nurses. Furthermore, it is necessary to develop support interventions for patients with chronic sorrow and their families.

  • 18.
    Isaksson, Ann-Kristin
    et al.
    Örebro University, Department of Health Sciences.
    Gunnarsson, Lars-Gunnar
    Ahlström, Gerd
    Örebro University, Department of Health Sciences.
    The presence and meaning of chronic sorrow in patients with multiple sclerosis2007In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 16, no 11C, p. 315-324Article in journal (Refereed)
    Abstract [en]

    AIM AND OBJECTIVES: The aim of this study was to explore the presence and meaning of chronic sorrow and the presence of depression in a fairly large group of persons with multiple sclerosis (MS). BACKGROUND: MS is a chronic and progressive neurological disease with a variety of symptoms. The patients have to live with losses of different kinds. A few earlier studies have used the concept of chronic sorrow to illustrate the emotional situation of such patients. METHOD: Sixty-one patients were interviewed about the occurrence of chronic sorrow and, thereafter, screened for depression. Thirty-eight (62%) of them fulfilled the criteria for chronic sorrow. The interviews were analysed with latent content analysis. RESULTS: Seven themes describe the losses that caused sorrow: loss of hope, loss of control over the body, loss of integrity and dignity, loss of a healthy identity, loss of faith that life is just, loss of social relations and loss of freedom. The sorrow was constantly present or periodically overwhelming. Only four of the 38 patients with chronic sorrow had symptoms of being mildly depressed. CONCLUSION: Chronic sorrow meant loss of hope, of control over the body, of integrity and of identity. The concept of chronic sorrow complements that of depression in providing important new knowledge relevant to understanding the consequences MS can have for the individual. RELEVANCE TO CLINICAL PRACTICE: Knowledge of the meaning of chronic sorrow can contribute to the nurse's ability to give psychological support and promote a sense of hope and control in the MS patient.

  • 19.
    Lidskog, Marie
    et al.
    Örebro University, School of Health and Medical Sciences.
    Löfmark, Anna
    Ahlström, Gerd
    Learning about each other: Students' conceptions before and after interprofessional education on a training ward2008In: Journal of Interprofessional Care, ISSN 1356-1820, E-ISSN 1469-9567, Vol. 22, no 5, p. 521-533Article in journal (Refereed)
    Abstract [en]

    In interprofessional work the striving of the members of each profession to establish their own positive in-group identity can be a source of conflict and have a negative effect on care. To counteract this, interprofessional training wards (IPTWs) have been developed in Sweden. The aim of the present study was to investigate similarities and differences in how student nurses, student occupational therapists and student social workers perceived their own and the other two professions before and after clinical education on an IPTW. Sixteen students were interviewed before and after the training on an IPTW in municipal care for older people in Sweden. A coding scheme developed in an earlier study was used in the analysis of the interviews. The findings indicate that there are changes in the students' stereotyped views, enhancing understanding of each other's professions after three weeks' clinical education on the IPTW. In some areas, however, there are still discrepancies between the description of own profession and the others' understanding of this profession that need to be confronted. In interprofessional training during education in social and health care there needs to be a balance between on the one hand the particular professional identity, on the other the shared identity implied by membership of the health-care team focusing on a common goal.

  • 20.
    Lidskog, Marie
    et al.
    Örebro University, School of Health and Medical Sciences.
    Löfmark, Anna
    Ahlström, Gerd
    Learning through participating on an interprofessional training ward2009In: Journal of Interprofessional Care, ISSN 1356-1820, E-ISSN 1469-9567, Vol. 23, no 5, p. 486-497Article in journal (Refereed)
    Abstract [en]

    Learning in clinical education can be understood as a process of becoming a legitimate participant in the relevant context. Interprofessional training wards (IPTWs) are designed to give students from educational programmes in health and social care a realistic experience of collaboration for the purpose of developing teamwork skills. IPTWs have been found to be appreciated by the students and to influence students' understanding of each other's professions. The aim of this study was to describe and analyse the students' learning on an interprofessional training ward in care for older persons through focusing on the students' ways of participating in the communities of practice on the ward. A case study design was chosen. Multiple data sources were used. The findings show that the students engaged as active participants in the care. At the same time there was sometimes a discrepancy between on the one hand expectations and goals, on the other hand actual participation. There were difficulties in making the training relevant for all the student groups involved. The findings indicate that in the planning of interprofessional education the choice of setting and learning situations is crucial with regard to the learning that will occur.

  • 21.
    Lidskog, Marie
    et al.
    Örebro University, School of Health and Medical Sciences.
    Löfmark, Anna
    Ahlström, Gerd
    Students' learning experiences from interprofessional collaboration on a training ward in municipal care2008In: Learning in Health and Social Care, ISSN 1473-6853, E-ISSN 1473-6861, Vol. 7, no 3, p. 134-145Article in journal (Refereed)
    Abstract [en]

    One way to offer students pursuing health and social care programmes realistic experiences of teamwork is interprofessional training wards where students from different educational programmes learn teamwork by working together. In the present study, a training ward in municipal care for older people was evaluated. Students from occupational therapy, nursing and social work programmes worked together on the ward for 3 weeks to learn with, from and about each other. The aim of the study was to compare students' attitudes towards practice on a training ward before and after and to evaluate goal fulfilment after 3 weeks' interprofessional education on a training ward. An attitude questionnaire was distributed to all students before and after their time on the ward, supplemented with a retrospective goal-fulfilment questionnaire afterwards. The results show that the collaborative, social experience the training ward offers was appreciated by the students and in most respects, met the learning goals set up for the course. The most important learning experience was working together in a real-life setting. However, there are some issues to take into consideration when planning and developing training wards. The setting needs to be realistic and relevant in relation to future roles for all of the student groups involved. The value and purpose of engaging together in basic patient care needs to be the subject of further investigation. When it comes to fostering competent team-workers, training wards seem to be one way forward. But to fully understand the challenges and difficulties involved in planning these wards, the learning achieved must be understood in the context of the setting as a whole, in all its aspects.

  • 22.
    Liedström, Elisabeth
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Isaksson, Ann-Kristin
    Örebro University, School of Health and Medical Sciences.
    Ahlström, Gerd
    School of Health Sciences, Jönköping University, Jönköping, Sweden .
    Chronic sorrow in next of kin of patients with multiple sclerosis2008In: The Journal of neuroscience nursing, ISSN 0888-0395, Vol. 40, no 5, p. 304-311Article in journal (Refereed)
    Abstract [en]

    The well-being of patients' next of kin can be an important factor with regard to the care and rehabilitation of patients with multiple sclerosis (MS). The aim of this qualitative study was to explore the presence and meaning of chronic sorrow in a group of next of kin of patients with MS. Using a semistructured interview guide as a basis, 44 next of kin were interviewed. The results showed that 35 (80%) of the participants were considered to have chronic sorrow based on predetermined criteria. Three main themes characterized the meaning of chronic sorrow: loss of security, loss of sense of community in family life, and loss of joy and recreation. This study indicates that nurses need to devote greater attention to the well-being of next of kin, offering support programs to help them cope with chronic sorrow.

  • 23.
    Liedström, Elisabeth
    et al.
    Örebro University, School of Health and Medical Sciences.
    Isaksson, Ann-Kristin
    Örebro University, School of Health and Medical Sciences.
    Ahlström, Gerd
    Swedish Institute for Health Sciences, Stockholm, Sweden.
    Quality of life in spite of an unpredictable future: the next of kin of patients with multiple sclerosis2010In: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 42, no 6, p. 331-341Article in journal (Refereed)
    Abstract [en]

    The aim of the study was to describe the quality of life of the next of kin of patients diagnosed as having multiple sclerosis (MS). Forty-four next of kin were interviewed and thereafter answered the Subjective Quality of Life questionnaire. The next of kin's quality of life emerged as good in terms of both external conditions and interpersonal relationships in both the interviews and the Subjective Quality of Life. In the interviews, most of the next of kin indicated a trusting and secure relationship with the cohabiting partner, but others described a strained situation with an unsatisfactory married/cohabiting life. There was worry about a worsening of the relationship in the future. In addition, the next of kin spoke of a decrease in freedom, self-actualization, and security, also of a more negative general mood and negative emotional experiences. The results of the questionnaire showed that a sense of engagement in life, having energy, self-actualization, self-assuredness, self-acceptance, security, and general mood were significantly correlated with quality of life as a whole. The study confirms that MS is a disease affecting the whole family, and the next of kin were living in uncertainty, facing an unpredictable future. The nurses could start family support groups and help the next of kin to look after their own health, giving advice on health-promoting behavior to make it possible for the person with MS to live at home even if the illness becomes worse.

  • 24.
    Lundqvist, Lars-Olov
    et al.
    Centre for Rehabilitation Research, Örebro University Hospital, Örebro.
    Ahlström, Gerd
    Örebro University, School of Health and Medical Sciences.
    Psychometric evaluation of the Ways of Coping Questionnaire as applied to clinical and nonclinical groups2006In: Journal of Psychosomatic Research, ISSN 0022-3999, E-ISSN 1879-1360, Vol. 60, no 5, p. 485-93Article in journal (Refereed)
    Abstract [en]

    Objective: The purpose of this study is to describe coping and evaluate the psychometric properties and the factor structure of the Ways of Coping Questionnaire (WCQ) applied to clinical and nonclinical groups.

    Method: The responses of 510 subjects (chronically disabled patients, their next of kin, and students) who completed the Swedish version of the WCQ were the basis for confirmatory factor analyses of the original eight-factor model as well as of the model consistency across samples.

    Results: The coping patterns that emerged in the case of the patients were very similar to those of the next of kin. The exceptions were greater use of Distancing by patients and of Positive Reappraisal by next of kin. The results showed support for the original eight-factor model, but deviation from the equality of factor structures among the subsamples indicated a limited use of the WCQ in between-sample comparisons.

    Conclusion: Modifications to the eight-factor model adequately described the subsamples, supporting the use of the WCQ in within-sample settings. This was particularly evident from the evaluation of alternative factor structures based on previously described models derived from clinical samples.

  • 25.
    Löf, Lennart
    et al.
    Örebro University, School of Health and Medical Sciences.
    Berggren, Lars
    Örebro University, School of Health and Medical Sciences.
    Ahlström, Gerd
    ICU patients' recall of emotional reactions in the trajectory from falling critically ill to hospital discharge: follow-ups after 3 and 12 months2008In: Intensive & Critical Care Nursing, ISSN 0964-3397, E-ISSN 1532-4036, Vol. 24, no 2, p. 108-121Article in journal (Refereed)
    Abstract [en]

    Patients' memories of frightening ICU experiences may be a threat to later psychological recovery. The purpose of the study is to describe ICU patients' recall of their emotional reactions, from falling critically ill to hospital discharge; this at 3 and 12 months following discharge from the ICU. The study is qualitative and concerns eight ICU patients ventilated for more than 72h. The participants were interviewed twice and the data were subjected to qualitative content analysis. It emerged that the memories of emotions during the trajectory of critical illness were extensive, detailed and strong, and that unpleasant emotions were clearly stable over time. At 12 months as compared with 3 months, the unpleasant emotions were less intense and had less prominent; furthermore the ICU care was more greatly associated with a sense of security, and there was greater recall of caring doctors and nurses (though not of their names) as well as next of kin. CONCLUSIONS: The study generated knowledge not previously described about how ICU patients' recollection of their emotions during the trajectory of critical illness changes over time. This has implications regarding future study of patients' ICU memories and regarding patients' need for support in coping with such memories.

  • 26.
    Pettersson, Ingvor
    et al.
    Örebro University, Department of Health Sciences.
    Ahlström, Gerd
    Örebro University, Department of Health Sciences.
    Törnquist, Kristina
    The value of an outdoor powered wheelchair with regard to the quality of life of persons with stroke: a follow-up study2007In: Assistive technology, ISSN 1040-0435, E-ISSN 1949-3614, Vol. 19, no 3, p. 143-153Article in journal (Refereed)
    Abstract [en]

    Evaluating the use of a powered wheelchair is of importance because of the increasing number of people with disabilities who are provided with one. The aim of this study is to describe characteristics of persons with stroke using an outdoor powered wheelchair and to evaluate the impact of the wheelchair on quality of life. A further aim is to compare the impact on quality of life in respect to age, gender, different disability characteristics, and living conditions. The 32 participants with stroke were recruited consecutively from three county council areas in Sweden. A follow-up design was applied including the EuroQol-5D questionnaires at baseline before the persons were prescribed an outdoor powered wheelchair, and after the participants had used the wheelchair for 3 to 5 months, data were collected by means of the EuroQol-5D and the Psychosocial Impact of Assistive Devices Scale (PIADS). The results indicated an improved quality of life with respect to the items competence, independence, capability, quality of life, well-being, happiness, and self-esteem on the PIADS. The usual activity dimension on the EuroQol-5D showed a significant improvement after wheelchair use. The group who drove the powered wheelchair at least once a day in the summer showed a more positive score on the total PIADS and its Competence subscale than persons who drove less. Furthermore, the group with higher rankings of the importance of the powered wheelchair scored higher on psychosocial impact than did the group with lower rankings. The conclusion is that the powered wheelchair mostly has a positive impact on the quality of life of users with stroke. Service providers should be alert, however, to the possible negative impact of a powered wheelchair on quality of life and support the user.

  • 27.
    Pettersson, Ingvor
    et al.
    Örebro University, Department of Health Sciences.
    Berndtsson, Inger
    Appelros, Peter
    Ahlström, Gerd
    Örebro University, Department of Nursing and Caring Sciences.
    Lifeworld perspectives on assistive devices: lived experiences of spouses of persons with stroke2005In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 12, no 4, p. 159-169Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to explore how spouses of persons with a disability following stroke describe their lived experiences regarding assistive devices in everyday life. A phenomenological lifeworld approach was used and conversational interviews were conducted with 12 spouses. Their lived experiences of assistive devices were explored in relation to four lifeworld existentials intertwined in everyday life. The results showed that lived body concerns aspects of feelings, habits, and incorporation of the devices with one's own body. The devices are, from the spouses' perspective, a prerequisite for their partner with stroke living at home. Successively the devices are incorporated into the couples' homes, and they provide a new view of the environment, aspects related to lived space. The devices bring about a changed relation to lived time, related to past, present, and future. Further, lived human relation concerns changed relationships to husbands/wives with stroke, including a great responsibility due to the devices and their usage. The results also included stigmatizing aspects and a twofold relationship to health professionals regarding participation in decisions about prescribing assistive devices. Understanding the unique meaning of assistive devices from the spouses' perspective is vital for occupational therapists prescribing such devices.

  • 28.
    Pettersson, Ingvor
    et al.
    Örebro University, Department of Health Sciences.
    Törnquist, Kristina
    Ahlström, Gerd
    Örebro University, Department of Health Sciences.
    The effect of an outdoor powered wheelchair on activity and participation in users with stroke2006In: Disability and Rehabilitation: Assistive Technology, ISSN 1748-3107, Vol. 1, no 4, p. 235-243Article in journal (Refereed)
    Abstract [en]

    Purpose.Persons with disabilities after stroke are often restricted in activity and participation in society because of mobility limitations. An outdoor powered wheelchair may be one among other interventions in a rehabilitation programme. The aim of this study was to describe and compare activity limitations and participation restrictions in persons with stroke from their own perspective, before and after using an outdoor powered wheelchair. Method. At baseline and follow-up two instruments were used: Individually Prioritized Problem Assessment (IPPA) and World Health Organization Disability Assessment Schedule II (WHODAS II). Results. The results indicated that the powered wheelchair has a great positive effect on activity and participation assessed with IPPA. The results also showed that most of the participants' problems could be categorised as belonging to the domain of 'Community, social and civic life' according to the International Classification of Functioning, Disability and Health (ICF), and the effect size in this domain was large (2.4) after the participants had used the wheelchair. Conclusion. An outdoor powered wheelchair is an essential device for persons with disability after stroke with regard to overcoming activity limitations and participation restrictions in everyday life.

  • 29. Schröder, Agneta
    et al.
    Ahlström, G.
    Wilde Larsson, B.
    Lundqvist, Lars-Olov
    Örebro University, School of Law, Psychology and Social Work.
    Quality in psychiatric care: from theoretical concepts to a new measuring instrument based on patient's own experiences2010Conference paper (Refereed)
  • 30.
    Schröder, Agneta
    et al.
    Psychiatric Research Centre, Örebro County Council, Örebro, Sweden.
    Ahlström, Gerd
    Swedish Institute for Health Science, Lund University, Lund, Sweden.
    Wilde Larsson, Bodil
    Department of Nursing, Karlstad University, Karlstad, Sweden; Department of Nursing, Hedmark University College, Elverum, Norway.
    Lundqvist, Lars-Olov
    Centre for Rehabilitation Research, Örebro County Council, Örebro, Sweden.
    Psychometric properties of the Quality in Psychiatric Care: Out-Patient (QPC-OP) instrument2011In: International Journal of Mental Health Nursing, ISSN 1445-8330, E-ISSN 1447-0349, Vol. 20, no 6, p. 445-453Article in journal (Refereed)
    Abstract [en]

    The purpose of the present study was to test the psychometric properties and dimensionality of the Quality in Psychiatric Care – Outpatient (QPC–OP) instrument, in order to determine whether the model of QPC that is applicable to the inpatient clinic is also applicable to the outpatient clinic, and to briefly describe the patients' perceptions of quality of psychiatric outpatient care. A sample of 1340 outpatients from 15 general adult psychiatric clinics in Sweden participated in the study. A confirmatory factor analysis revealed that the QPC–OP consists of eight dimensions, and has a factor structure largely corresponding to that of the QCP – Inpatient instrument. The internal consistency of the factors was generally acceptable, except in the case of two, where there were not enough items. Thus, the QPC–OP shows adequate psychometric properties. The patients' ratings of quality of care were generally high; the highest rating was for ‘encounter’ and the lowest for ‘discharge’. The quality of discharge was rated as the lowest among the eight dimensions in 14 of the participating outpatient clinics. Thus, this dimension would seem to indicate an important area for improvement. The QPC–OP includes important aspects of patients' assessments of quality of care, and offers a simple and inexpensive way to evaluate psychiatric outpatient care.

  • 31. Schröder, Agneta
    et al.
    Wilde Larsson, Bodil
    Ahlström, Gerd
    Lundqvist, Lars-Olov
    Örebro University, School of Health and Medical Sciences.
    Psychometric properties of the instrument quality in psychiatric care and descriptions of quality of care among in-patients2010In: International Journal of Health Care Quality Assurance, ISSN 0952-6862, Vol. 23, no 6, p. 554-570Article in journal (Refereed)
    Abstract [en]

    Purpose – The purpose of this paper is to test the psychometric properties and dimensionality of a new instrument, quality in psychiatric care (QPC), and to describe and compare quality of care among in-patients as measured by this instrument.

    Design/methodology/approach – The instrument quality in psychiatric care measures patients' experiences regarding quality of care. The instrument is based on a definition of quality of care from the patients' perspective. A sample of 265 in-patients at eight general psychiatric wards in Sweden was assessed.

    Findings – Exploratory factor analysis revealed that the original five-dimensional 69-item QPC was better with six dimensions and reduced to 30 items, hereinafter denoted quality in psychiatric care-in-patients (QPC-IP) with retained internal consistency. The patients' ratings of quality of care were generally high; the highest rating was for quality of encounter and the lowest for participation.

    Research limitations/implications – Analysis of the dropouts was not possible because of incomplete registrations at the wards.

    Practical implications – QPC-IP is a simple, inexpensive and quick way to evaluate quality of care and thus contributes to health care improvement in the field of psychiatry.

    Originality/value – The new 30 items instrument, QPC-IP includes important aspects of patients' perceptions of quality of care. The QPC-IP is psychometrically adequate and thus recommended for evaluating patients' experiences of the quality of psychiatric care.

  • 32. Silén, Marit
    et al.
    Svantesson, Mia
    Örebro University, School of Health and Medical Sciences.
    Ahlström, Gerd
    Nurses' conceptions of decision making concerning life-sustaining treatment2008In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 15, no 2, p. 160-173Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe nurses' conceptions of decision making with regard to life-sustaining treatment for dialysis patients. Semistructured interviews were conducted with 13 nurses caring for such patients at three hospitals. The interview material was subjected to qualitative content analysis. The nurses saw decision making as being characterized by uncertainty and by lack of communication and collaboration among all concerned. They described different ways of handling decision making, as well as insufficiency of physician-nurse collaboration, lack of confidence in physicians, hindrances to patient participation, and ambivalence about the role of patients' next of kin. Future research should test models for facilitating communication and decision making so that decisions will emerge from collaboration of all concerned. Nurses' role in decision making also needs to be discussed.

  • 33.
    Svantesson, Mia
    et al.
    Örebro University, School of Health and Medical Sciences.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences.
    Thorsén, Håkan
    Örebro University, School of Health and Medical Sciences.
    Kallenberg, Kjell
    Ahlström, Gerd
    Hälsohögskolan i Jönköping.
    Interprofessional ethics rounds concerning dialysis patients: staff's ethical reflections before and after rounds2008In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 34, no 5, p. 407-413Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To evaluate whether ethics rounds stimulated ethical reflection. METHODS: Philosopher-ethicist-led interprofessional team ethics rounds concerning dialysis patient care problems were applied at three Swedish hospitals. The philosophers were instructed to stimulate ethical reflection and promote mutual understanding between professions but not to offer solutions. Questionnaires directly before and after rounds were answered by 194 respondents. The analyses were primarily content analysis with Boyd's framework but were also statistical in nature. FINDINGS: Seventy-six per cent of the respondents reported a moderate to high rating regarding new insights on ethical problem identification, but the ethics rounds did not seem to stimulate the ethical reflection that the respondents had expected (p < 0.001). Dominant new insights did not seem to fit into traditional normative ethics but were instead interpreted as hermeneutic ethics. This was illustrated in the extended perspective on the patient and increased awareness of relations to other professions. Regarding insights into how to solve ethical problems, the request for further interprofessional dialogue dominated both before and after rounds. CONCLUSION: The findings show the need for interprofessional reflective ethical practice but a balance between ethical reflection and problem solving is suggested if known patients are discussed. Further research is needed to explore the most effective leadership for reflective ethical practice.

  • 34.
    Svantesson, Mia
    et al.
    Örebro University, School of Health and Medical Sciences.
    Löfmark, Rurik
    Thorsén, Håkan
    Kallenberg, Kjell
    Ahlström, Gerd
    Learning a way through ethical problems: Swedish nurses’ and doctors’ experiences from one model of ethics rounds2008In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 34, no 5, p. 399-406Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To evaluate one ethics rounds model by describing nurses' and doctors' experiences of the rounds.

    METHODS: Philosopher-ethicist-led interprofessional team ethics rounds concerning dialysis patient care problems were applied at three Swedish hospitals. The philosophers were instructed to promote mutual understanding and stimulate ethical reflection, without giving any recommendations or solutions. Interviews with seven doctors and 11 nurses were conducted regarding their experiences from the rounds, which were then analysed using content analysis. Findings: The goal of the rounds was partly fulfilled. Participants described both positive and negative experiences. Good rounds included stimulation to broadened thinking, a sense of connecting, strengthened confidence to act, insight into moral responsibility and emotional relief. Negative experiences were associated with a sense of unconcern and alienation, as well as frustration with the lack of solutions and a sense of resignation that change is not possible. The findings suggest that the ethics rounds above all met the need of a forum for crossing over professional boundaries. The philosophers seemed to play an important role in structuring and stimulating reasoned arguments. The nurses' expectation that solutions to the ethical problems would be sought despite explicit instructions to the contrary was conspicuous.

    CONCLUSION: When assisting healthcare professionals to learn a way through ethical problems in patient care, a balance should be found between ethical analyses, conflict resolution and problem solving. A model based on the findings is presented.

  • 35. Törnqvist, Anna Lena
    et al.
    Ahlström, Gerd
    Örebro University, Department of Health Sciences.
    Widner, Håkan
    Rehncrona, Stig
    Fulfilment of patients' goals after thalamic deep brain stimulation: a follow-up study2007In: Parkinsonism & Related Disorders, ISSN 1353-8020, E-ISSN 1873-5126, Vol. 13, no 1, p. 29-34Article in journal (Refereed)
    Abstract [en]

    Deep brain stimulation (DBS) in the ventrolateral thalamus (VIM) is shown to reduce tremor in essential tremor (ET) and Parkinson's disease (PD). Our aim was to evaluate the results of VIM DBS from the patients' perspective. Sixteen consecutively included patients (8 ET and 8 PD) described their own outcome goals preoperatively and evaluated the fulfilment 1, 6 and 12 months postoperatively. We conclude that the patients could do specific activities that are of importance to them such as eating, drinking and socializing, and perceived either partial or total fulfilment of their goals. (c) 2006 Elsevier Ltd. All rights reserved.

  • 36.
    Widar, Marita
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ahlström, Gerd
    Hälsohögskolan, Jönköping.
    Ek, Anna-Christina
    Inst Medicin och Vård, Hälsouniversitetet, Linköping.
    Pain conditions after a stroke2009Conference paper (Refereed)
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