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- Fex, Angelika, 1955-
(författare)
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From novice towards self-care expert : studies of self-care among persons using advanced medical technology at home
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The use of advanced medical technology at home has increased in most industrialized countries. The overall aim of this thesis was to develop knowledge of self-care and transition and issues that influence daily life and health among persons using advanced medical technology at home.Three qualitative studies were performed to describe the structure of self-care (I) and elucidate meanings of health-illness transition experiences among persons using long-term oxygen, or a ventila-tor, or performing blood or peritoneal dialysis (II), and to gain a deeper understanding of the meaning of living with an adult family member in this context (III). Ten interviews with adult patients (I-II) and ten with adult next of kin (III) in this context were performed and analysed with descriptive phenome-nological (I), phenomenological hermeneutical (II) and hermeneutical (III) methods. A quantitative, descriptive, comparative, cross-sectional design was used to describe and find factors that influence self-care agency and perceived health in a larger group of persons (180 patients) using the enumerated types of advanced medical technology at home (IV).In the results, (I) self-care among persons using long-term oxygen, a ventilator, or equipment for blood or peritoneal dialysis at home was described at a generic level, independent of the specific type of technology used. The general description of self-care in this context involved prerequisites for, activities for and consequences of self-care; (II) the health-illness transition among adult persons in this context was interpreted as contentment at being part of the active and conscious process towards transcending into a new state of living, in which the individual and the technology were in tune. The successful and healthy transition experience was characterized by human growth and becoming; (III) living with a family member who is using advanced medical technology at home was interpreted as meaning rhythmical patterns of being closely connected to but also separated from him or her, and of sorrow versus reconciliation. Dependence on others was reflected in a need for support from the healthcare professionals and significant others; (IV) health-related and technology-related variables in daily life were rated as satisfactory to quite a high extent, but participants using long-term oxygen perceived their health as significantly lower compared to the other technology groups. Further, a significant difference in sense of coherence was found between users of long-term oxygen and peri-toneal dialysis. Factors that contributed to self-care agency and sense of coherence were found.In conclusion, self-care in a high-tech home context means more than simply mastering the technology. With the goal of maintaining an active, social life, the health-illness transition involves a learning process of accepting and integrating the technology into daily life. With knowledge and support, patients and next of kin are able to assume substantial responsibility for self-care/dependent-care. Daily life seems to be manageable for patients using this kind of technology at home.
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- Flensner, Gullvi, 1945-
(författare)
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Fatigue in individuals with multiple sclerosis : lived experiences and perceived impact in daily life
- 2005
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to gain knowledge about experiences of fatigue among individuals diagnosed with MS and to compare these experiences with those of individuals in the general population. Individuals' experiences of fatigue have been approached both inductively and deductively and qualitative and quantitative research methods have been combined. A total of 372 individuals participated in the studies: 178 individuals diagnosed with MS (I-IV), and 194 individuals randomly selected from the general population. These individuals functioned as reference group and were comparable with the MS sufferers as regards age and sex (III-IV).Experiences of fatigue were investigated before-and-after an intervention with a cooling suit among eight individuals diagnosed with MS (I). Fatigue as lived through and its perceived meaning were addressed in a phenomenological interview study among nine individuals with MS (II). Reliability and validity of a tool to assess impact of fatigue in daily life, the Swedish version of the Fatigue Impact Scale (FIS), was investigated in a cross-sectional study among 161 individuals with MS in comparison with 194 individuals in the general population (III). Further, experiences of fatigue, in terms of its perceived impact in daily life in relation to perceived health was addressed in a study which comprised 155 individuals diagnosed with MS who were compared with 190 individuals from the general population (IV).The collection of data included open interviews conducted before-and-after the intervention (I) and in the phenomenological study (II). A self-written semi-structured oneweek diary was completed during the test-period with the cooling suit (I). Perceived impact of fatigue in daily life was assessed in a self-assessment questionnaire, with the FIS (I, III, IV) and a symptom list (IV) included. The individuals' perceived health was addressed by means of a single rating-question (IV).Living with fatigue means living with a time-consuming and an all-absorbing phenomenon, which is both non-constructively and constructively perceived and involves either the whole body or parts of it (II). Experiences of fatigue were reduced during the intervention period. Overall levels of fatigue, in terms of its duration and perceived severity, and also its perceived impact in daily life, were reported diminished and the participants reported a sense of well-being and contentment during the period (I). Among the individuals with MS, fatigue was regarded as one of, or as their worst symptom. The experience of fatigue was more than three times as frequent as among the individuals in the general population. In MS, the perceived impact of fatigue in daily life was not found to be related either to age or numbers of years of being diagnosed with MS, but it was with the indicated levels of perceived health (IV). Among individuals diagnosed with MS, the FIS was found to be a reliable and valid tool measuring impact of fatigue in daily life. Also in the reference group comprising individuals in the general population, the FIS captured and distinguished between different levels of the impact of fatigue (III).
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