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1.
  • Benzein, Eva, et al. (författare)
  • Families' importance in nursing care : nurses' attitudes - an instrument development
  • 2008
  • Ingår i: Journal of Family Nursing. - 1074-8407. ; 14:1, s. 97-117
  • Tidskriftsartikel (refereegranskat)abstract
    • This article describes the development and testing of a research instrument, Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA), designed to measure nurses' attitudes about the importance of involving families in nursing care. The instrument was inductively developed from a literature review and tested with a sample of Swedish nurses. An item-total correlation and a first principal component analysis were used to validate the final instrument, including a second principal component analysis to analyze dimensionality, and Cronbach's alpha was used to estimate internal consistency. The instrument consists of 26 items and reveals four factors: families as a resource in nursing care, family as a conversational partner, family as a burden, and family as its own resource. Cronbach's alpha was 0.88 for the total instrument and 0.69 to 0.80 for the subscales. The instrument requires further testing with other nurse populations.
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2.
  • Håkanson, Cecilia, et al. (författare)
  • Struggling with an unfamiliar and unreliable body : the experience of irritable bowel syndrome
  • 2009
  • Ingår i: Journal of Nursing and Healthcare of Chronic Illness. - Oxford : Blackwell Publishing. - 1752-9824. ; 1:1, s. 29-38
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim. To describe the phenomenon living with irritable bowel syndrome from a life-world perspective.Background. Ten to twenty per cent of the adult population in the world is known to live with irritable bowel syndrome. The life-world experience of people with irritable bowel syndrome has been paid little attention. A deeper understanding about the phenomenon living with irritable bowel syndrome is of interest for the future development of care.Design and methods. The study was performed using a phenomenological method. Data was collected by in-depth, open interviews performed in 2006, with nine persons between 25–55 years, diagnosed with irritable bowel syndrome. The interviews were analysed according to the method of Giorgi.Results. Six interrelated key constituents have been identified: Having an altered self-image, feeling ashamed, distrusting the body, feeling tired, blaming oneself, and finding solutions. A structure has been formulated, describing that living with irritable bowel syndrome means struggling with an unfamiliar and unreliable body. Tiredness, distrust, and feelings of shame towards the body bring about limitations in everyday life. At the same time, living with irritable bowel syndrome means having a strong will to exceed the limitations and become familiar with one self.Conclusion. This study suggests that living with irritable bowel syndrome means to struggle with an unfamiliar and unreliable body that brings about changes of self-image and limitations in every day life. Feelings of distrust, shame and embarrassment towards troublesome symptoms, are important contributions to the limitations experienced.Relevance to clinical practice. Nurses have a major role to play in the care for people with irritable bowel syndrome. A caring perspective, in which the life-world is central, is an important approach to care for these persons. Using the dialogue as a forum where patients can share their unique life-world experiences lets nurses gather knowledge that is essential in helping patients identify and acknowledge new and positive understandings of the lived body.
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3.
  • Benzein, Eva, et al. (författare)
  • The level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care
  • 2005
  • Ingår i: Palliative Medicine : A Multiprofessional Journal. - 0269-2163. ; 19:3, s. 234-240
  • Tidskriftsartikel (refereegranskat)abstract
    • Hope, hopelessness and fatigue are important experiences for patients and family members in palliative care. The aim of the study was to describe the level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care. Eighty-five participants completed the Herth Hope Index, Beck's Hopelessness Scale and rated their level of fatigue from none to severe. The level of hope proved to be significantly lower among the family members than among the patients. For the family members, correlations were found between hope and age (–0.358*), fatigue and hope (–0.439*), hopelessness and age (0.484**), age and fatigue (0.403**) and between hope and hopelessness (–0.723**). For the patients, correlations were found between age and hopelessness (0.555**) and between hopelessness and hope (–0.580**). Efforts to increase the experience of hope and decrease hopelessness and fatigue must include not only the patient but also the family members. (*=P<0.5, **=P<0.01).
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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, Katrin, 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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