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- Munthe, Christian, 1962
(author)
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The magic word? Ethical experience of prioritizing cancer-related health action in a Swedish context
- 2018
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In: What is so Special about Cancer? Perspectives from Clinical Research, Philosophy and Social Sciences, University of Cambridge, April 5-6, 2018.
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Conference paper (other academic/artistic)abstract
- Across health systems and the history of modern welfare societies, the experience of cancer as a privileged diagnostic category in the prioritizing of resources for different health actions is commonplace, although there are notable exceptions to be found in low resource settings. While this situation can often be criticised from an ethical standpoint, health resource allocation also has a political pragmatic side that may, if not justify, so at least partly excuse the way in which measures related to cancer are being given privileged access to healthcare and public health resources. This since democratically elected political representatives cannot completely ignore the iconic status of cancer in the public mind. I describe some of this dynamic based on the Swedish experience of introducing screening and testing programs, as well as new drugs for cancer treatment. While Sweden is certainly not immune to the privileged standing of cancer in health resource allocation, there is a development in public and popular attitude towards a more egalitarian conception of cancer disease compared to other diseases. Parts that explain this development have to do with a new and more systematic focus on assessing the effectiveness of and evidence for suggested health actions according to generic models, such as HTA, standardised rules how priority setting arguments must be shaped in order to have political validity, and a broader awareness of the phenomenon of opportunity cost in policy making generally. In addition, political agendas increasingly focused on cost cutting in public expenditure in spite of ever greater levels of societal wealth has certainly also contributed, albeit that mechanism may probably also be properly criticised from an ethical standpoint.
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- Granhagen Jungner, Johanna, et al.
(author)
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The interpreter's voice : Carrying the bilingual conversation in interpreter-mediated consultations in pediatric oncology care
- 2019
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In: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 102:4, s. 656-662
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Journal article (peer-reviewed)abstract
- Objectives: The objective of this study was to explore interpreters' perceived strategies in the interaction in interpreter-mediated consultations between healthcare personnel and patients/families with limited Swedish proficiency in pediatric oncology care. Methods: This study had an inductive approach using an exploratory qualitative design. A total of eleven semi-structured interviews were performed with interpreters who had experience interpreting in pediatric oncology care. Results: The interpreters' perceived strategies were divided into four generic categories; strategies for maintaining a professional role, strategies for facilitating communication, strategies for promoting collaboration, and strategies for improving the framework of interpreting provision. These four generic categories were then merged into the single main category of carrying the bilingual conversation. Conclusions: The interpreters stretch their discretionary power in order to carry the bilingual conversation by using strategies clearly outside of their assignment. Practical implications: The study contributes to the understanding of the interpreter-mediated consultation in pediatric oncology care, and this can be used to improve the care of patients and families in pediatric oncology care with limited knowledge of a country's majority language.
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- Granhagen Jungner, Johanna, et al.
(author)
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Language barriers and the use of professional interpreters : a national multisite cross-sectional survey in pediatric oncology care
- 2019
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In: Acta Oncologica. - 0284-186X .- 1651-226X. ; 58:7, s. 1015-1020
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Journal article (peer-reviewed)abstract
- Background: Healthcare personnel are responsible for providing patient-centered care regardless of their patients' language skills, but language barriers is identified as the main hindrances providing effective, equitable and safe care to patients with limited proficiency in a country's majority language. This study is a national multisite cross-sectional survey aiming to investigate communication over language barriers in pediatric oncology care. Material and Methods: A survey using the Communication over Language Barriers questionnaire (CoLB-q) distributed to medical doctors, registered nurses and nursing assistants at six pediatric oncology centers in Sweden (response rate 90%) using descriptive statistical analyses. Results: Professional interpreters on site were the most common solution when using an interpreter, although relatives or even children were used. The use of professional interpreters on site differed among the professions and in different clinical situations, such as medical encounter, education or procedure preparation. All professions reported that the use of professional interpreters greatly increased care relationships, patient safety and patient involvement in care. Conclusions: Healthcare personnel seem to believe that professional interpreters are crucial when caring for patients and family members who do not speak the majority language, but there is an obvious discrepancy between this belief and their use of professional interpreters.
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- Nordgren, Anders, 1953-
(author)
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First-in-human trials on genome editing: Strategies for handling uncertainty about benefit and uncertainty about harm
- 2017
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Conference paper (peer-reviewed)abstract
- Human genome editing can be carried out on somatic cells as well as on the germline. In this paper I discuss first-in-human trials on both types of editing. At first sight, risk and risk/benefit assessment might seem to be key issues in such trials. However, according to decision theory, risk presupposes numerical values. In ‘decision-making under risk’, decisionmakers have sufficient information to assign probabilities to alternative outcomes. This is not the case in first-in-human trials. These trials are rather characterized by ‘decision-making under uncertainty’. My overall objective is to clarify the implications of uncertainty about benefit and uncertainty about harm in first-in-human trials on genome editing. A special aim is to analyse strategies for handling uncertainty.
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