| 1. |
- Jakobsson Larsson, Birgitta, 1965-
(författare)
-
Quality of life, Coping and need for Support during the ALS disease trajectory
- 2016
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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.
|
|
| 2. |
- Godskesen, Tove
(författare)
-
Patients in Clinical Cancer Trials : Understanding, Motivation and Hope
- 2015
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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.
|
|
| 3. |
- Hellerstedt Börjesson, Susanne, 1956-
(författare)
-
Taxane-induced pain : Experiences of women with breast cancer and nurses providing their care
- 2018
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Breast cancer patients receiving taxane chemotherapy run a substantial risk of develop taxane-induced pain, but little is known about women’s experiences of such pain. The aim of this thesis was to explore women’s acute and longstanding experiences of taxane-induced pain, to evaluate the pain intensity and distribution using different assessment methods, and to study nurses´ perceptions of taxane-induced pain in people with breast cancer.The women experienced pain during chemotherapy with 37– 48% incidence of acute taxane-induced pain. The subjective burden of taxane-induced pain described by the women covered narratives from manageable pain to very difficult and disabling pain with a major impact on their lifeworld (Study I).Longstanding pain in the lifeworld of women with previous breast cancer, was explored through a retrospective reflection after 12 months. The descriptions of pain revealed a time perspective; as pain perceived at that specific time, currently ongoing pain, and pain expectations for the future. This resulted in the women sensing themselves of being somewhere between health and illness gazing into an uncertain future (Study II).A quantitative longitudinal assessment of taxane-induced pain using; the body image, the VAS, and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30) showed the women’s estimated pain; its intensity, distribution and occurrence - as it appeared during the actual taxane treatment and up to a year afterward. The baseline measurement on the VAS revealed low initial pain, VAS <10, which changed at treatment Cycle 1. The body image revealed intense and widespread pain, and pain after 12 months, as did the EORTC QLQ -C30 (Study III).The nurses’ estimations of taxane-induced pain varied to large extent in both prevalence and intensity. Large parts of the body were expected to be involved in the pain. Nurses lacked local and/or national guidelines reflecting a low level of generalized use of prophylaxis against taxane pain (Study IV).In conclusion, taxane-induced pain is a common debilitating symptom during taxane chemotherapy for women with breast cancer. Pain impacts women´s life during as well as long time after the completion of taxane treatment. Taxane pain can be accurately or successfully estimated using various pain assessment tools. Furthermore, guidelines for dealing with taxane-induced pain are needed.
|
|
