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- Olsson, Louise
(author)
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Hopp hos döende patienter med cancer i palliativ hemsjukvård
- 2011
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Licentiate thesis (other academic/artistic)abstract
- Hope is meaningful and very important for people – even for people at the last days of their lives. Health professionals can sometimes describe hope in terms of hope for a cure, which may lead to feelings of hopelessness or empty hope for a patient with an incurable disease. In research, there is very little written about hope in the palliative home care context, even more so from the patient’s perspective. The aim of this project was to study how hope changes over time in cancer patients at the palliative phase, and to study the strategies used to cope with these changes. This was studied from the patients’ own perspective and in a home care context, but with the ambition of developing the results into a model or theory.Grounded Theory was the chosen research approach. Two sets of tape-recorded interviews were made with 11 patients in specialized palliative home care – a total of 20 interviews. The patients were also asked to write diaries about changes in their everyday feelings of hope within a 4-week period. Measurements of hope (HHI-S) and symptoms (ESAS) were also made at three occasions. Constant comparison of data was made during the analysis.The results showed that patients’ hope changed over time. Hope was described as a process involving a glimmering core of hope untouched by external circumstances (Study I). Hope was described in different processes, creation of a convinced hope, creation of simulated hope, collection and maintaining moments of hope and gradually extinct hope. The dying patient’s hope can be described as a gradual and successive adaptation process. Strategies for maintaining life were expressed to preserve the meaning in life, to communicate with others about life and death, to involve "fellow travelers" and to change focus. The strategy of preparing for death involved; taking responsibility for the future and seeing possibilities of living on even after death (Study II). The strategies were parallel to, and dependent on each other. It is important that health professionals understand the patient’s own strategies for maintaining life/hope, as well as the patient’s own preparations for death, so that hope is never taken away despite preparations at the end of life.In summary, hope can be interpreted as a changing process over time – a process that can change quickly, but is based on an inviolable core that is not easily moved by external circumstances. It is important that the health care personnel realize that patients simultaneously prepare for their deaths even as they try to maintain hope. Deeper understanding of what hope can mean for a patient can decrease the risk of hope being taken away during one’s final days.
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| 2. |
- Godskesen, Tove
(author)
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Patients in Clinical Cancer Trials : Understanding, Motivation and Hope
- 2015
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of this thesis was to study participants' understanding of clinical cancer trials, and their motivation for participation. Of particular interest was the question of whether the patients hoped for a cure resulting from the trial. The thesis was based on four studies and used three methods: interviews, a questionnaire, and empirical bioethics. The results of Study I indicated that the participants in phase 1 trials understood most of the information provided, but were unaware of both the very small potential for treatment benefit, and the risk of harm. Patients in phase 3 trials had a good understanding of the trial, except regarding side effects and their right to withdraw. Some found it hard to ask questions and felt they needed more information (Study III). The participants in phase 1 trials were strongly motivated by the generally unrealistic hope for therapeutic benefit (Study I). When the chances of a cure are minuscule, as for participants with end-stage cancer in phase 1 trials, hope can play an important, positive role and offer meaning to one’s remaining life. However, hope for an unrealistic outcome could also deprive patients of an opportunity to spend their remaining lives, as they would otherwise choose (Study II). The participants in phase 3 trials indicated that their motivation for participation was multifaceted; the most common motivations included hope of therapeutic benefit, altruism, access to extra clinical examinations or better care, and a wish to repay society for the help they had received (Study III). After stratifying and analysing the motivation data by gender, age, education and previous experience of trial participation, males and those aged ≥65 years were significantly more motivated to participate out of a desire to reciprocate the help they had received, either because of a sense of duty or because their families or friends considered that they should attend (Study IV). In conclusion, the informed consent process seems to work relatively well, with good results within most subgroups. However, patients with end-stage cancer who are participating in phase 1 trials are a vulnerable group as they have very little potential for treatment benefit coupled with a tangible risk of harm.
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| 3. |
- Jakobsson Larsson, Birgitta, 1965-
(author)
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Quality of life, Coping and need for Support during the ALS disease trajectory
- 2016
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of this thesis was to investigate quality of life, coping and emotional distress (i.e. anxiety and depression) among newly diagnosed ALS patients. An additional aim was also to investigate relatives’ experiences of the care for the patient and the support they received for themselves during the disease progression.The most nominated areas of importance for the patient’s overall QoL were family, friends and own physical health. Most patients rated their QoL as good, which did not change at subsequent measurement, despite their physical function having changed for the worse during disease progression. Some patients had symptoms of clinical anxiety and depression during the first year after diagnosis. The total quality of life score did not correlate with physical function but with depression early on after diagnosis. Most patients used support and independence as strategies to cope with the disease during the first six months after diagnosis. There were few changes early on after the diagnosis, and the patients used several different strategies. The results show that the use of coping strategies remained stable over time. Both physical function and emotional distress correlated significant with different coping strategies, with some variation during the disease progression. Relatives experienced the care of their loved one as positive and based on the patient’s needs and desires. The treatment, knowledge, support and help from the staff were important for the relatives’ feeling of security. Different factors influence the use of support for themselves. The relatives did not think of their own needs, but their focus was rather on the patient.The results of the thesis highlight the importance of providing support both to patients and their relatives during the disease progression. With early and regular evaluation on quality of life, coping and emotional well-being among the patients, the health professionals may be able to support the patients based on their specific needs, which probably will increase their quality of life.
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| 4. |
- Svantesson, Mia, 1960-
(author)
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Postpone death? : Nurse-physician perspectives on life-sustaining treatment and ethics rounds
- 2008
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Doctoral thesis (other academic/artistic)abstract
- The starting point of the present thesis is nurses’ reported experiences of disagreements with physicians for pushing life sustaining treatment too far. The overall aim was to describe and compare nurses’ and physicians’ perspectives on the boundaries for life-sustaining treatment and to evaluate whether ethics rounds could promote mutual understanding and stimulate ethical reflection. A mixed methods design with qualitative and quantitative data was used, including interviews and questionnaires. The health professionals’ experiences/perceptions were based on known patients foremost from general wards, but also intensive care units, at four Swedish hospitals. The first two studies treated the perspective on boundaries for life-sustaining treatment and the last two evaluated philosopher- ethicist led ethics rounds. Analysis of data was performed using a phenomenological approach and content analysis as well as comparative and descriptive non-parametric statistics. In the first study, the essence of the physicians’ decision-making process to limit life-sustaining treatment for ICU patients, was a process of principally medical considerations in discussions with other physicians. In the second study, there were more similarities than differences between nurses’ and physicians’ opinions regarding the 714 patients studied. The physicians considered limited treatment as often as the nurses did. The ethics rounds studies generated mixed experiences/perceptions. It seemed that more progress was made toward the goal of promoting mutual understanding than toward the goal of stimulating ethical reflection. Above all, the rounds seemed to meet the need for a forum for crossing over professional boundaries. The most salient finding was the insight to enhance team collaboration, that the interprofessional dialogue was sure to continue. Predominating new insights after rounds were interpreted as corresponding to a hermeneutic approach. One of nurses’ negative experiences of the ethics rounds was associated with the lack of solutions. Based on the present findings, one suggestion for improvement of the model of ethics rounds is made with regard to achieving a balance between ethical analyses, conflict resolution and problem solving. In conclusion, the present thesis provides strong evidence that differences in opinions regarding boundaries for life-sustaining treatment are not associated with professional status. The findings support the notion of a collaborative team approach to end-of-life decision-making for patients with diminished decisionmaking capacity. There is an indication that stimulation of ethical reflection in relation to known patients may foremost yield psychosocial insights. This could imply that social conflicts may overshadow ethical analysis or that ethical conflicts and social conflicts are impossible to distinguish.
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| 5. |
- Wallin, Viktoria
(author)
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Mealtimes in palliative care contexts : Perspectives of patients, partners, and registered nurses
- 2022
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Doctoral thesis (other academic/artistic)abstract
- The overall aim was to explore patients’, partners’, and registered nurses’ (RNs)experiences of mealtimes in palliative care contexts. Qualitative (studies I, II, IVand V) and quantitative (study IV) study designs were used to explore the experiences of mealtimes in palliative care from various perspectives. Three interview studies (studies I, II, V), a mixed-method systematic review (study III),and a cross-sectional study (study IV), were conducted. The findings showed that patient’s appreciated support that resembled their needs and wishes during hampered eating. Being encouraged to eat could both reduce and induce distress and well-being, social life was affected. Food and eating had existential loading (I, III). The partners described how they tried to support their dying partner by striving to maintain ordinariness around food and mealtimes, as well as finding new ways to support eating (II). RNs highlighted that food and mealtimes in palliative care cause psychosocial distress for patients and their families. Exploration implies that RNs perceptions align with patients’and families’, indicating awareness of the challenges that patients and families face (IV). RNs in palliative care are well prepared to support patients with eating challenges related to physical problems, but might be less prepared to support existential, psychological, and social needs (V).In conclusion, efforts to minimize the distress that patients and families experience in relation to mealtimes in palliative care are required. An area in need of further development is how to support RNs in communicating about food and mealtimes in palliative care to support patients’, partners’, and families’ well-being at the patient’s end-of-life.
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| 6. |
- Fröjd, Camilla, 1967-
(author)
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Cancer Patients’ Satisfaction with Doctors’ Care : Consequences and Contributing Conditions
- 2007
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Doctoral thesis (other academic/artistic)abstract
- The main aims were to: explore whether there is a relation between doctors’ ability to identify patients’ worry and wish for information and self-efficacy with regard to communicating with patients about difficult matters; describe which cues doctors consider when estimating patients’ worry and wish for information, and investigate whether there is a relation between patients’ satisfaction with doctors’ care and patients’ psychosocial function. Eleven doctors and 69 patients (of which 36 patients participated in the longitudinal study) with carcinoid tumours participated. Doctors’ self-efficacy, and ability to identify patients’ worry/wish for information were investigated at patients’ first admission. Doctors were interviewed about which cues they considered when estimating patients worry/wish for information. Patients’ satisfaction with care (CASC SF 4.0) and psychosocial function (EORTC QLQ-C30, HADS) were measured longitudinally, during the first year after diagnosis. Doctors reported higher self-efficacy when showing good ability to identify patients’ wish for information, than when showing less good ability, overestimated patients’ worry and underestimated patients’ wish for information. Doctors considered patients’ verbal behaviour and body language together with knowledge and experience when estimating patients worry and wish for information. Patients who met doctors showing good ability to identify their wish for information, reported a higher cognitive function than patients who met doctors showing less good ability. At all assessments patients expressed high satisfaction with doctor’ care and patients’ satisfaction did not change over time. Patients’ satisfaction with doctors’ care were related to their psychosocial function shortly after the first three admissions to specialist care. Patients with carcinoid tumours in some respects reported a worse HRQoL than the general Swedish population. Fatigue, diarrhoea, limited possibilities to work/pursue daily activities, and worry that the illness will get worse were among the most prevalent, and worst, aspects of disease- and treatment related distress.
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| 7. |
- Röing, Marta, 1944-
(author)
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Understanding Oral Cancer - A Lifeworld Approach
- 2007
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Doctoral thesis (other academic/artistic)abstract
- Dental involvement with oral cancer patients during their treatment and rehabilitation can be long and intense. How can dental personnel better understand their role in the treatment of these patients? How does treatment affect the patients and their spouses? In searching for answers, the theories of phenomenography, phenomenology and hermeneutics are used to describe and interpret the experiences of the hospital dental treatment teams, oral cancer patients, and their spouses. Study I reveals that hospital dental treatment teams perceive the encounter with head and neck cancer patients in three qualitatively different ways; as an act of caring, as a serious and responsible task, and as an overwhelming emotional situation, indicating that they are not always able to lean on education and professional training in dealing with situations with strong emotional impact. Study II gives insight into the lifeworld of oral cancer patients, and how the patient becomes embodied in a mouth that is increasingly `uncanny´, as it slowly ceases to function normally. Study III shows that oral cancer puts a hold on the lifeworld of the patients’ spouses which can be described as `living in a state of suspension´. These findings suggest that the support needs of patients and spouses appear to be greatest at treatment end, when, upon returning home, they are faced with the accumulated impact of the patients’ sickness and treatment. Study IV gives insight into what it may mean to live with the consequences of oral cancer, revealing a silent physical, emotional and existential struggle to adjust to a changed way of living. This thesis raises the question if todays’ organisation of oral cancer care can meet the varying emotional and existential needs of treatment teams, patients and spouses that were brought to light.
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