| 1. |
- Godskesen, Tove E., et al.
(författare)
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The culture of hope and ethical challenges in clinical trials : A qualitative study of oncologists and haematologists' views
- 2020
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Ingår i: Clinical Ethics. - : SAGE Publications. - 1477-7509 .- 1758-101X. ; 15:1, s. 29-38
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Tidskriftsartikel (refereegranskat)abstract
- We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland (n = 29) face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture.
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| 2. |
- Helgesson, Gert, et al.
(författare)
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Should the deceased be listed as authors?
- 2019
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Ingår i: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 45:5, s. 331-338
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Tidskriftsartikel (refereegranskat)abstract
- Sometimes participants in research collaboration die before the paper is accepted for publication. The question we raise in this paper is how authorship should be handled in such situations. First, the outcome of a literature survey is presented. Taking this as our starting point, we then go on to discuss authorship of the dead in relation to the requirements of the Vancouver rules. We argue that in principle the deceased can meet the requirements laid down in these authorship guidelines. However, to include a deceased researcher as author requires a strong justification. The more the person has been involved in the research and writing process before he or she passes away, the stronger the justification for inclusion.
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| 3. |
- Kneck, Åsa, 1973-, et al.
(författare)
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Encumbered by vulnerability and temporality : the meanings of trigger situations when learning to live with diabetes
- 2016
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 25:19-20, s. 2874-2883
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: The aim of the study was to illuminate the meanings of trigger situations experienced in everyday life when learning to live with diabetes.BACKGROUND: Adults become active learners when faced with situations they do not know how to manage, triggering a need to understand something in a different way than before. Knowing more about experiential learning for persons living with diabetes is important for understanding how learning can be supported by health care.DESIGN: A life-world approach with a phenomenological hermeneutical method, inspired by the philosophy of Paul Ricoeur.METHODS: This method was used for interpreting transcriptions of interviews and consists of three stages: naïve understanding, structural analysis and a comprehensive understanding. Participants (n = 13), with either type I or type II diabetes, were interviewed on three different occasions over a three-year period after being diagnosed with diabetes.RESULTS: When learning to live with diabetes, the meanings of trigger situations were described as 'the unpredictable body heightens insecurity with awareness of one's own dependability', 'losing control in unsustainable situations' and 'encumbered by vulnerability and temporality in earlier familiar situations'.CONCLUSION:The meanings of trigger situations were to lose the smooth, unreflected way of managing an everyday life situation, interlaced with feelings of lost control of how to live with new insights of being vulnerable. Trigger situations meant an opportunity for learning, as well as being demanding, unplanned and with limited freedom of choice. Trigger situations presented life and body as unpredictable.RELEVANCE TO CLINICAL PRACTICE: If healthcare professionals can identify the worries and questions raised in trigger situations, knowledge gaps can be identified and reflected on to stimulate learning.
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| 4. |
- Kneck, Åsa, 1973-
(författare)
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Living with diabetes : a lifelong learning process
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Living with diabetes, as a lifelong illness, is interlaced with learning and to face continual changes. However, the role of time in this learning process is not yet well understood. The overall aim of the thesis was to gain a deepened understanding of learning to live with diabetes for those recently diagnosed and over a three year period. The thesis, involving four studies where qualitative inductive content analysis (I, III) and phenomenological hermeneutical interpretation (II, IV) were used, has a lifeworld approach and a qualitative and longitudinal design. Thirteen persons, recently diagnosed with diabetes (type I or II), were interviewed on three different occasions over a three year period. All interviews focused on the experience of living with diabetes and situations where diabetes had to be taken into account. The aim of study I was to reach an understanding of how learning to live with diabetes is experienced in the first 2 months after diagnosis. The findings revealed to be taken over by a new reality, with a body that played a role in life with the health care service as a necessary partner. The aim of study II was to illuminate the meaning of learning to live with diabetes three years after being diagnosed. The findings revealed learning as making decisions through use of different sources of information and as solving the life-puzzle – a delicate balance to create a desired life. The aim of study III was to identify patterns in learning when living with diabetes, from recently being diagnosed, and over a 3-year period. In the findings five patterns were identified illuminating different learning processes emerging over time. A longer time living with diabetes did not per se mean increased satisfaction in living well with illness or increased confidence in understanding one’s own needs. The aim of the IV study was to illuminate the meanings of trigger situations in learning to live with diabetes. The findings revealed trigger situations, such as being encumbered by vulnerability and temporality in unsustainable situations with an unpredictable body and a life involving new concerns for the future. The thesis conducted that learning was an informal and ongoing everyday process in life. Time living with diabetes meant both an increased mastery of a changed life situation, but also increased difficulties in achieving well-being and with a dependency on health care. Hence, health care interventions must adhere to the individual’s needs and not be based on duration of illness. Understanding the body and the role of health care, as well as what facilitates and hampers learning, changed with time. It is therefore important that health care personnel illuminate the individual understanding and experiences of those living with diabetes as this was found to be important for the learning process as well as for their sense of well-being.
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| 5. |
- Kneck, Åsa, et al.
(författare)
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Living with diabetes : development of learning patterns over a 3-year period
- 2014
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : CoAction Publishing. - 1748-2623 .- 1748-2631. ; 9, s. 24375-
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Learning involves acquiring new knowledge and skills, and changing our ways of thinking, acting, and feeling. Learning in relation to living with diabetes is a lifelong process where there is limited knowledge of how it is experienced and established over time. It was considered important to explore how learning was developed over time for persons living with diabetes. AIM: The aim of the study was to identify patterns in learning when living with diabetes, from recently being diagnosed, and over a 3-year period. MATERIALS AND METHODS: A longitudinal qualitative descriptive design was used. Thirteen participants, with both type I and type II diabetes, were interviewed at three different occasions during a 3-year period. Qualitative content analysis was used in different steps in order to distinguish patterns. FINDINGS: Five main patterns of learning were identified. Two of the patterns (I and II) were characterized by gradually becoming comfortable living with diabetes, whereas for one pattern (IV) living with diabetes became gradually more difficult. For pattern V living with diabetes was making only a limited impact on life, whereas for Pattern III there was a constant management of obstacles related to illness. The different patterns in the present study showed common and different ways of learning and using different learning strategies at different timespans. CONCLUSION: The present study showed that duration of illness is not of importance for how far a person has come in his own learning process. A person-centered care is needed to meet the different and changing needs of persons living with diabetes in relation to learning to live with a lifelong illness.
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| 6. |
- Pettersson, S, et al.
(författare)
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An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life.
- 2012
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Ingår i: Scandinavian Journal of Rheumatology. - : Taylor & Francis. - 0300-9742 .- 1502-7732. ; 41:5, s. 383-390
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The aim of this study was to explore the most distressing symptoms of systemic lupus erythematosus (SLE) and determine how these relate to health-related quality of life (HRQoL), anxiety/depression, patient demographics, and disease characteristics (duration, activity, organ damage).METHODS: In a cross-sectional study, patients with SLE (n = 324, age 18-84 years) gave written responses regarding which SLE-related symptoms they experienced as most difficult. Their responses were categorized. Within each category, patients reporting a specific symptom were compared with non-reporters and analysed for patient demographics, disease duration, and results from the following questionnaires: the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), the Systemic Lupus Activity Measure (SLAM), the SLE Disease Activity Index (SLEDAI), and the Systemic Lupus International Collaboration Clinics/American College of Rheumatology (SLICC/ACR) damage index.RESULTS: Twenty-three symptom categories were identified. Fatigue (51%), pain (50%), and musculoskeletal distress (46%) were most frequently reported. Compared with non-reporters, only patients reporting fatigue showed a statistically significant impact on both mental and physical components of HRQoL. Patients with no present symptoms (10%) had higher HRQoL (p < 0.001) and lower levels of depression (p < 0.001), anxiety (p < 0.01), and disease activity (SLAM) (p < 0.001).CONCLUSION: Fatigue, pain, or musculoskeletal distress dominated the reported symptoms in approximately half of the patients. Only patients reporting fatigue scored lower on both mental and physical aspects of HRQoL. Our results emphasize the need for further support and interventions to ease the symptom load and improve HRQoL in patients with SLE. Our findings further indicate that this need is particularly urgent for patients with symptoms of pain or fatigue.
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| 7. |
- Spörndly, Robert, et al.
(författare)
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Representation of Ethnic Minorities in Swedish Clinical Cancer Trials: A Qualitative Study of Physicians' Experiences
- 2018
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Ingår i: Harvard Public Health Review. ; 20, s. 1-10
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Tidskriftsartikel (refereegranskat)abstract
- International literature shows ethnic minorities and immigrants being underrepresented in clinical trials. This compromises the generalizability of the results and distributes the benefits of participating unequally. This problem is unexplored in Sweden. Therefore, this explorative qualitative study examines the barriers Swedish physicians encounter, the strategies they use to prevent and circumvent the issue, and the attitudes and perceptions they have. We found that physicians do encounter ethnic minority patients that they exclude from participation in clinical cancer trials. This is primarily because of language barriers preventing patients from understanding participant information. Conscious strategies to counter this are lacking. A lack of translated material and strict inclusion criteria are two obstacles that can be overcome. The general conception is that this issue is uncommon and unimportant from a medical perspective, but questions of fairness have been raised. For such reasons, further discussion and research on this issue are needed.
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