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Sökning: AMNE:(TVÄRVETENSKAPLIGA FORSKNINGSOMRÅDEN) > Ahlström Gerd > Örebro universitet

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1.
  • Tang, Ping Fen, et al. (författare)
  • Chinese nurses' ethical concerns in a neurological ward.
  • 2007
  • Ingår i: Nursing Ethics. - 0969-7330. ; 14:6, s. 810-824
  • Tidskriftsartikel (refereegranskat)abstract
    • Our aim was to describe Chinese nurses' experiences of workplace distress and ethical dilemmas on a neurological ward. Qualitative interviews were performed with 20 nurses. On using latent content analysis, themes emerged in four content areas: ethical dilemmas, workplace distress, quality of nursing and managing distress. The ethical dilemmas were: (1) conflicting views on optimal treatment and nursing; (2) treatment choice meeting with financial constraints; and (3) misalignment of nursing responsibilities, competence and available resources. The patients' relatives lacked respect for the nurses' skills. Other dilemmas could be traced to the transition from a planned to a market economy, resulting in an excessive workload and treatment withdrawal for financial reasons. Lack of resources was perceived as an obstacle to proper patient care in addition to hospital organization, decreasing the quality of nursing, and increasing moral and workplace distress. The nurses managed mainly by striving for competence, which gave them hope for the future.
2.
  • Pettersson, Ingvor, et al. (författare)
  • Lifeworld perspectives on assistive devices : lived experiences of spouses of persons with stroke.
  • 2005
  • Ingår i: Scandinavian Journal of Occupational Therapy. - 1103-8128. ; 12:4, s. 159-169
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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3.
  • Pettersson, Ingvor, et al. (författare)
  • The value of an outdoor powered wheelchair with regard to the quality of life of persons with stroke : a follow-up study
  • 2007
  • Ingår i: Assistive technology. - New York, NY : Demos. - 1040-0435. ; 19:3, s. 143-153
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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4.
  • Boström, Katrin, et al. (författare)
  • Being the next of kin of an adult person with muscular dystrophy
  • 2006
  • Ingår i: Clinical Nursing Research. - 1054-7738. ; 15:2, s. 86-104
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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5.
  • Boström, Katrin, et al. (författare)
  • Living with a chronic deteriorating disease : the trajectory with muscular dystrophy over ten years.
  • 2004
  • Ingår i: Disability and Rehabilitation. - 0963-8288. ; 26:23, s. 1388-1398
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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6.
  • Boström, Kristina, et al. (författare)
  • Living with a hereditary disease : persons with muscular dystrophy and their next of kin.
  • 2005
  • Ingår i: American Journal of Medical Genetics. - 0148-7299. ; 136A:1, s. 17-24
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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7.
  • Boström, Kristina, et al. (författare)
  • Quality of life in patients with muscular dystrophy and their next of kin
  • 2005
  • Ingår i: International Journal of Rehabilitation Research. - 0342-5282. ; 28:2, s. 103-109
  • Tidskriftsartikel (refereegranskat)abstract
    • The aims of this study were to investigate quality of life (QoL) among adult patients with muscular dystrophy (n=46) and their next of kin (n=36) and to investigate the influence of disease-related and demographic factors on QoL. The questionnaire "Subjective estimation of quality of life" was used. The results show that patients had lower QoL than their next of kin regarding having no work or meaningful occupation, energy, self-assuredness, self-acceptance and emotional experiences. Age of onset of disease had an impact on QoL. The need for a ventilator had an influence only on assessment of energy. Patients without a partner assessed lower than those who had a partner. In the case of a person who is young and single the onset of muscular dystrophy reduces the likelihood of having a partner or children and affects personal economy negatively. Assessment of relationship to friends was lower among next of kin who provided daily help than among those who provided help once a week. There is a need for recurrent rehabilitation during life-long disabilities and a need to give particular support to those with early onset of disease, those who are single and those who are childless. It is also important to include the patient's close relations when giving rehabilitation.
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8.
  • Boström, Katrin, et al. (författare)
  • Sickness impact in people with muscular dystrophy : a longitudinal study over 10 years.
  • 2005
  • Ingår i: Clinical Rehabilitation. - 0269-2155. ; 19:6, s. 686-694
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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9.
  • Edvardsson, Tanja, et al. (författare)
  • Experiences of onset and diagnosis of low-grade glioma from the patient's perspective.
  • 2006
  • Ingår i: Cancer Nursing. - 0162-220X. ; 29:5, s. 415-422
  • Tidskriftsartikel (refereegranskat)abstract
    • The aim of this study was to describe adult patients' experiences of falling ill and being diagnosed with low-grade glioma. Information concerning such experiences is lacking in the literature. The study population were adults identified within a well-defined population. Interviews were conducted with 27 patients. The interview texts were analyzed using inductive content analysis. Illness onset was described as a sequence of events. Nineteen patients narrated rapid onset and 8 patients prolonged onset. The most commonly described symptoms in both types of onset were headache, epileptic seizures, vomiting, and vision changes. Racing thoughts, depression, and tinnitus were 3 of the more uncommon symptoms. The most prominent negative experiences regarding healthcare included disrespectful encounters and a lack of opportunity for participation. The salient negative life-situation consequences included a lack of social support and attitudes expressing a lack of understanding. However, to some extent, positive experiences also emerged in the interviews concerning healthcare and life situation despite the onset of the illness. In conclusion, most of the patients in the study experienced the illness onset as stressful. Healthcare staff need particular knowledge to understand the vulnerability of the patient in the onset of low-grade glioma.
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10.
  • Edvardsson, Tanja, et al. (författare)
  • Illness-related problems and coping among persons with low-grade glioma.
  • 2005
  • Ingår i: Psycho-Oncology. - 1057-9249. ; 14:9, s. 728-737
  • Tidskriftsartikel (refereegranskat)abstract
    • The literature reveals no qualitative study concerning the consequences of low-grade glioma in adults. The aim of the present study was to describe perceived illness-related problems in persons with low-grade glioma and the coping used in everyday living. The study was cross-sectional within a well-defined population. A semi-structured qualitative interview was conducted with each of 39 persons, and the data were subjected to inductive content analysis. There was a wide range of perceived problems, mainly concerning bodily functions, memory, cognition, emotion, communication and perception. Several coping strategies emerged, the most frequent being searching for a solution, which was often related to memory and communication problems. One characteristic of communication was the creation of new words. Other common strategies were refraining from and avoiding and laughing and joking. Caring about self involved prioritizing of personal needs. A striving to feel a sense of solidarity within seeking social affinity was coping with a novel content. The study provides vivid narratives about previously unreported phenomena, conveying a deeper understanding. The variety and endurance of problems revealed verifies the need of support from several professionals, including in the form of out-patient post-medical care.
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