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  • 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.
  • 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.
  • Beeckman, Dimitri, et al. (författare)
  • EPUAP classification system for pressure ulcers : european reliability study
  • 2007
  • Ingår i: Journal of Advanced Nursing. - 0309-2402. - 0309-2402 ; 60:6, s. 682-691
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim. This paper is a report of a study of the inter-observer reliability of the European Pressure Ulcer Advisory Panel pressure ulcer classification system and of the differential diagnosis between moisture lesions and pressure ulcers. Background. Pressure ulcer classification is a valuable tool to provide a common description of ulcer severity for the purposes of clinical practice, audit and research. Despite everyday use of the European Pressure Ulcer Advisory Panel system, its reliability has been evaluated in only a limited number of studies. Methods. A survey was carried out between September 2005 and February 2006 with a convenience sample of 1452 nurses from five European countries. Respondents classified 20 validated photographs as normal skin, blanchable erythema, pressure ulcers (four grades), moisture lesion or combined lesion. The nurses were familiar with the use of the European Pressure Ulcer Advisory Panel classification scale. Results. Pressure ulcers were often classified erroneously (kappa = 0.33) and only a minority of nurses reached a substantial level of agreement. Grade 3 lesions were regularly classified as grade 2. Non-blanchable erythema was frequently assessed incorrectly as blanchable erythema. Furthermore, the differential diagnosis between moisture lesions and pressure ulcers appeared to be complicated. Conclusion. Inter-observer reliability of the European Pressure Ulcer Advisory Panel classification system was low. Evaluation thus needs to focus on both the clarity and complexity of the system. Definitions and unambiguous descriptions of pressure ulcer grades and the distinction between moisture lesions will probably enhance clarity. To simplify the current classification system, a reduction in the number of grades is suggested.
  • 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.
  • 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).
  • 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.
  • 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.
  • Boström, Katrin, 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.
  • 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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