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- Bjuresäter, Kaisa, 1970-
(författare)
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Home enteral tube feeding - from patients’, relatives’ and nurses’ perspectives
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Changes in the health-care system during the past decades have led to an increased transfer of health care to the home environment which also concerns patients treated with home enteral tube feeding (HETF). Research is scarce about how HETF care is functioning. Therefore, the overall aim with this thesis was to describe and explore HETF care and treatment from patients', relatives' and nurses' perspectives. Three qualitative and one quantitative study were used. The findings showed that the HETF treatment and care had a great impact on daily life for both patients and their relatives and implied many practical, emotional and social problems in their daily life, which they strived to manage. Side effects were common and the patients' reported low HRQL and general health. The amount and quality of received guidance and support from the health care, not least before discharge, turned out to have impact on the patients' and the relatives' daily life and how they could manage their situation. Lack of guidance and support meant insecurity, worries and distress. Cooperation in the care trajectory was found to be decisive for how well the care was running. Nurses' knowledge about tube feeding and discharge planning procedures, their commitment to the patients' care, as well as clarity regarding responsibility of HETF care were factors of crucial importance on how the cooperation worked, and the quality of the HETF care. This thesis shows the need of improvements regarding the care of HETF patients and their relatives.
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| 3. |
- Helgesen, Ann Karin, 1962-
(författare)
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Patient participation in everyday life in special care units for persons with dementia
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this thesis was to acquire knowledge about patient participation in everyday life of persons with dementia living in SCUs in nursing homes. Data collection and analysis in studies I-III was carried out according to Grounded Theory. Data was collected by open non- participant observations during 51 hours, and conversations with 8 residents and 17 health care personnel (I), interviews carried out twice with 12 relatives (II) and 11 nursing personnel (III), and by a study specific questionnaire based on the findings from study I-II to 233 relatives (IV). Descriptive and non-parametric statistics were used (IV).Presence of nursing personnel in body, mind and morality was found to be the prerequisite for patient participation (I). This required personnel with high competence in dementia care, commitment to and interest in the resident, and continuity in their work (I, III). Wellbeing and dignity in the resident’s everyday life was found to be the most important goal, not necessarily a high level of patient participation (II-III). The level of participation had to be adjusted to the resident’s ability and wish to take part in decisions in the very moment. However, the level was often primarily adjusted to suit the personnel’s ideas about how to carry out daily care (I, III). Relatives had an important role in the participation process by interacting, and exchanging information, with the personnel. By forming a basis for individualised care in this way, relatives made a difference to the resident’s everyday life and contributed to their wellbeing and dignity (II-IV). The SCU’s context also affected patient participation (I-IV).Patient participation must be given attention by leaders and be prioritised in dementia care. Nursing personnel can enhance patient participation by promoting relatives’ partaking in the participation process, as this has potential for further contributing to quality of care.
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| 4. |
- Hov, Reidun, 1947-
(författare)
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Nursing care for patients on the edge of life : Nurses’ experiences of nursing care in intensive and nursing home related to questions of withholding or withdrawing curative treatment
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis was to deepen the understanding of nursing care for seriously ill patients on the edge of life in intensive care unit (ICU) and nursing home when questions were raised whether to withhold or withdraw curative treatment. Method: All studies were conducted in a qualitative frame of reference with interviews of nurses in two contexts in Norway; group interviews of 14 nurses in an ICU (study I, III), and individual interviews of 14 nurses in two nursing homes (study II, IV). Data were analysed with interpretative phenomenology (I, III, IV) and phenomenography (II). Findings: The nurses’ descriptions of the patients on the edge of life were interpreted as ‘being in a twilight zone’, a state between living and dying. The patients’ situation were understood to be very burdensome as they were mostly ‘voiceless’ and unable to call for, or refuse help and totally surrendered to other people’s devices. Their state was strained by extensive suffering; pains and bodily afflictions, loneliness, confusion and without control and dignity (I). Their need for nursing care was comprehensive (I, II) with an overall need for dignity (II), which included having the needs for preparedness, human relationship, comfort and safety met (II). The patients’ inabilities to express themselves clearly involved major challenges for nursing care (I - IV). Good nursing care was described as caring for the individual patient based on his/her situation and needs. The nurses experienced themselves to be of imperative importance for the patient’s living or dying (III, IV) and their interpretation of the patient’s condition was crucial (III). Their commitment and drive to help was high, they knew what good nursing care was for the patients (I - IV), and they were proud when they succeeded in their care (III, IV). An outstanding finding was the nurses’ experiences of ambiguity of both certainty and uncertainty. Being certain mostly seemed to concern nursing care related to the patient’s needs and situation (I, II), and uncertainty to what was ‘right’ to do with regards to withholding or withdrawing treatment (III, IV). They often experienced loneliness, too much responsibility, a vulnerable professional pride, and being pulled between opposite poles when they struggled to give good nursing care (I - IV), but too often they failed (II, IV). This demanding situation sometimes led to the nurses’ use of several self-protecting strategies. Whether the patients could receive good nursing care or not did not only depend on the single nurse, but was also anchored in opportunities and hindrances on a relational and an organisational level (I – IV). There were many congruities in patterns in the experiences of ICU - and nursing - home - nurses with regards to the situation and needs of patients on the edge of life, and good nursing care. Congruities were also found regarding being a nurse when caring for these patients, and nurses’ opportunities and hindrances for carrying out good nursing care. Conclusion: This thesis shows that nursing care was experienced as being of crucial importance to the patients on the edge of life, and the nurses knew very well what good nursing care was for them. However, the nurses’ opportunities to perform good nursing care depended on several preconditions and were restricted by hindrances on different levels, which have to be overcome in order to fulfil patients’ needs and nurses’ ambitions of giving good nursing care. As such, this thesis highlights a wide-ranging understanding of nursing care for these patients, which should challenge individual nurses, but also other health care workers, leaders and politicians.
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- Larsson, Maria, 1968-
(författare)
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Eating problems in patients with head and neck cancer treated with radiotherapy : Needs, problems and support during the trajectory of care
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis was to acquire knowledge about daily life with focus on eating problems during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Method: The data in study I were gained from medical and nursing records of 50 patients. Documented parameters of eating problems, their causes and consequences, and undertaken interventions were collected before treatment, during radiotherapy, and one, six, and twelve months after completion of treatment, using a study-specific audit instrument. Data were analysed with descriptive and inferential non-parametric statistics. In study II eight patients were interviewed during the radiotherapy treatment period with focus on experiences of eating problems. In study III nine patients were interviewed six to twelve weeks after treatment with the focus on experiences of daily life during the trajectory of care having eating problems. In study IV twelve patients were interviewed about their conceptions of the significance of a supportive nursing care clinic during the whole trajectory of care. Data were analysed with interpretative phenomenology (II, III) and phenomenography (IV). Findings: The four studies showed that being a patient in the trajectory of care often meant that life was disturbed and threatened. This was partly due to the eating problems and their consequences, which could occur during the whole trajectory of care (I, III, IV) but was experienced as most intense and severe during radiotherapy (II) and the nearest weeks after completion of radiotherapy (III, IV). The disturbances and threats experienced due to eating problems could affect the whole person as they were physical (I-IV), psychological, social and existential (II, III). The experiences of eating problems due to the tumour and its treatment and the experience of having cancer per se were strongly connected as one phenomenon, which disturbed and threatened the informants’ daily life. The other part that disturbed the patients’ life was the waiting in suspense. A long and trying waiting in uncertainty was experienced due to lack of knowledge and support, practical as well as emotional. This was most pronounced during pauses in radiotherapy (III) and after completion of the treatment when the lack of support from the health care was obvious (I, II, III). The patients were then most often left to their own devices. In order to endure, they needed both inner strength, described as own coping strategies, and strength from outside, described as support from family, friends and health care professionals (II, III). The nurse clinic was found to give a hand to hold during the whole trajectory of care (IV). It could meet these patients’ needs of knowledge, care and support, both concerning practical measures related to the eating problems and other side-effects of the treatment, and concerning their emotional needs. In addition the nurse clinic could support the relatives in their worries and anxiety (IV). Conclusion: This thesis showed the necessity of continuous assessment, treatment and evaluation of patients’ problems, and the patients’ needs of information and support throughout the trajectory of care.
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