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- Ziegert, Kristina
(författare)
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Everyday Life among Next of Kin of Haemodialysis Patients
- 2005
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Everyday life can be complex when next of kin of haemodialysis patients are preoccupied with taking care of the patient and his/her health, which implies the difficulties and requirements needed. The general aim of this thesis was to explore and describe everyday life among next of kin of haemodialysis patients with focus on the life situation, health, time and professional support. Two perspectives of the thesis was applied: a holistic perspective on the everyday life of next of haemodialysis patient and a social perspective with focus on human communication and understanding of next of kin’s experience of everyday life. A qualitative descriptive and explorative design, comprising a phenomenographic and content analysis was used in Studies I-IV. The data collected in the studies consisted of interviews with next of kin to haemodialysis patient and analysis of professional support for next of kin to chronic haemodialysis patients in nursing documentation from two hospitals in Sweden. The experience of time in everyday life among next of kin of haemodialysis patients demonstrated that time for them is minimised and life space contracted. Next of kin experienced ambivalence towards their own health, especially in cases of patients’ spouses When next of kin of haemodialysis patient’s became involved in the patients’ care, they experienced arduousness in relation to their own health as well as less uninterrupted time for themselves in everyday life, and their life situation was characterised by confinement and social isolation. They were aware of the prognosis of renal disease and the fact that haemodialysis is a life-sustaining treatment, which forced them to live for the moment. The everyday life among the next of kin changed when the family became involved in the care, which in turn lead to a changed life situation and restrictions in everyday life. Lack of knowledge in nursing documentation of professional support revealed necessity of the readiness of next of kin. It is therefore important to be familiar with this in the nursing process, especially when the patient and their next of kin need support and attention in everyday life.Original papers not included.
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| 2. |
- Bolse, Kärstin
(författare)
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Caring for Patients with an Implantable Cardioverter Defibrillator Experiences of Patients and Healthcare Professionals
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: An Implantable Cardioverter Defibrillator (ICD) is a technical device used in the treatment of ventricular arrhythmias. After the implantation of an ICD the entire life situation can be affected with psychological and social consequences for the patient and his/her next of kin. The healthcare professionals play a vital role in providing educational information, support, and technical follow-up of the device. During recent years more and more hospitals have introduced a more team based organisation where the physicians collaborate with specialised ICD nurses. Aim: The overall aim of the thesis was to explore how patients with an ICD experienced their life situation and howhealthcare professionals described their experiences of delivering care to ICD patients. Methods: The design was descriptive, combining both quantitative and qualitative approaches, and the data was collected from Sweden and the USA. The Uncertainty of Illness Scale (MUIS-C) and Quality of life Index (QLI) instruments were used to determine the level of uncertainty and satisfaction with life (I), in-depth interviews with a phenomenographic approach was used to describe how Swedish and US patients living with an ICD conceived their life situation (II, III) and how healthcare professionals’ experienced delivering care to patients with an ICD, (IV). Finally, to explore clinical aspects of ICD care in Sweden, the Delivery of ICD Questionnaire (DOIQ) was used to describe the healthcare professionals’ experiences and a content analysis was used to describe the written educational information material provided to patients (V). Results: There were no differences in uncertainty between pre and post ICD implantation either in Swedish or the US patients. Satisfaction with life was significantly higher among US patients compared to Swedish patients both before and after ICD implantation within the health-functioning, socio-economic and psychological-spiritual domains. The Swedish ICD patients experienced a significantly higher satisfaction with life within the socioeconomic domain after 3 months. (I). The patients felt safe in having an ICD implanted, but the conceptions varied from seeing the device as a life saver to being worried about what could happen. Gratitude at having an ICD varied from happiness at being alive to something that was alien and disturbed the patient. Being more or less dependent included how patient experienced feelings from well-being to grief. Having a network varied from having sufficient support to loneliness. Having a belief in the future ranged from having confidence to look forward to resignation. Gaining awareness described patients’ adaptation to living with an ICD and limitations due to the ICD (II). The patients also underwent a transition from becoming aware of the restriction in the life situation through a process of adaption and having trust in the ICD. This phase was followed by a reorientation phase where they adapted to their life situation and the patient and his/her family regained of their lives (III). The healthcare professionals strove to provide competent and individualised care and infuse confirmation to the patients in form of information, education and support. They gave the patients tools to handle their life situation, through existential support and mediating security (IV). Half of the hospitals had nurse-based clinic and others planned to introduce them. Three hospitals performed follow-up in the form of remote home monitoring. The nurse had specific ICD education from ICD companies and/or various university courses. In the educational information material the biophysical dimensions dominated while the emotional dimension was scarcely described, and the spiritual-existential was not referred to at all (V). Conclusions: This thesis offers a further contribution to the scholarly discussion about the relationship between technology and human existence and how to cope with this transition. Our studies revealed that the embodiment of the ICD reflects a merger of experiences about its presence and potential from both patients’ and healthcare professionals’ perspective. This research hopefully encourages healthcare professionals to carefully reflect on what it is like to live with an ICD and to consider practice improvement for the patients’ and the next of kin.
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| 3. |
- Flemme, Inger, 1947-, et al.
(författare)
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Living with life-saving technology : long-term follow-up of recipients with implantable cardioverter defibrillator
- 2010
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Konferensbidrag (refereegranskat)abstract
- The evidence that treatment of life-threatening arrhythmia (LTA) with an Implantable Cardioverter Defibrillator (ICD) can prolong life is convincing. Living with a lifelong heart disease will gradually influence the everyday life and encompasses some or all aspects of life. In order to influence health outcomes, the impact of the ICD must be considered in a broader context including not only the physical, but also the psychological and social functioning of the individual.The general aim of this thesis was to describe everyday life in recipients living with an ICD in a longterm perspective. The aim in Paper I was to describe changes in the life situation of recipients’ with an ICD over a period of 1 year. The aim in Paper II was to describe quality of life (QOL) and uncertainty in recipients who have an ICD and to predict QOL at long-term follow-up. Fifty-six recipients participated (I) and 35 of these recipients, who had survived at least five years, were further included (II). The Quality of Life Index-Cardiac version (I, II), Mishel Uncertainty in Illness Scale-Community version (I, II), Patient ICD Questionnaire (I) and multiple regression analysis (II) were used. Higher scores indicate higher QOL and uncertainty. The questionnaires were completed before implantation, three and twelve months after implantation (I) and also five years after implantation i.e. long-term follow up (II). At the long-term follow up, the average ICD recipient had lived with an ICD for six years and nine months (6.9 years). The results showed the overall QOL and QOL in the health/functioning domain were unchanged over time. QOL in the socio-economic (p= .002) and psychological/spiritual domains (p= .012) decreased in the first year. From baseline to long-term follow up, the QOL in the family domain (p= .011) and overall uncertainty (p= .002) decreased. Uncertainty related to the information decreased at year 1 in relation to baseline (p= .001).The aim in Paper III was to illuminate the main concern of recipients living with an ICD and how they handle this in their daily life. Sixteen recipients who had lived with an ICD between six to twenty-four months were interviewed. Data was collected and analysed in a simultaneous process according to guidelines for classical grounded theory. In the analysis, a substantive theory was generated explaining the main concern of ICD recipients and how they handle this in their daily life. The core category, labelled “Striving to resume command”, illuminates the main concern of ICD recipients. To manage this main concern, the recipients used the following strategies: Economizing resources, Distracting oneself, Submitting to one’s fate and Re-evaluating life.The aim in Paper IV was to explore relationships between OQL, coping strategies, anxiety, depression and perceived control in recipients living with an ICD and to compare those having received an ICD less or more than one year ago and those with a primary or secondary preventive indication. A cross-sectional, correlational, multicenter design was used, and 147 recipients who had lived with an ICD between six to twenty-four months completed Quality of Life Index-Cardiac version, Jalowiec Coping Scale, Hospital Anxiety and Depression Scale and Control Attitude Scale. The results showed that anxiety, depression and perceived control were predictors of QOL. Anxiety was also a predictor of coping with optimistic coping being the most used coping strategy. There was no relationship between QOL and coping. No differences were found in QOL, coping, anxiety, depression and perceived control between recipients implanted either on a primary or secondary preventive indication or having the device less or more than one year.In this thesis, it was concluded that the ICD recipients strived to resume command over their life (III) and the more control the recipients perceived the more satisfied they were with their QOL (IV) and the more symptoms of anxiety, depression and uncertainty they experienced the less satisfied they were with their QOL (II, IV). Coping strategies were used more frequently by ICD recipient perceiving more anxiety (IV). QOL was fairly good 6,9 years after implantation and ICD recipients felt less uncertain once they had passed the first year of their illness.
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