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- Abacan, MaryAnn, et al.
(författare)
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The Global State of the Genetic Counseling Profession
- 2019
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Ingår i: European Journal of Human Genetics. - : NATURE PUBLISHING GROUP. - 1018-4813 .- 1476-5438. ; 27:2, s. 183-197
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Forskningsöversikt (refereegranskat)abstract
- The profession of genetic counseling (also called genetic counselling in many countries) began nearly 50 years ago in the United States, and has grown internationally in the past 30 years. While there have been many papers describing the profession of genetic counseling in individual countries or regions, data remains incomplete and has been published in diverse journals with limited access. As a result of the 2016 Transnational Alliance of Genetic Counseling (TAGC) conference in Barcelona, Spain, and the 2017 World Congress of Genetic Counselling in the UK, we endeavor to describe as fully as possible the global state of genetic counseling as a profession. We estimate that in 2018 there are nearly 7000 genetic counselors with the profession established or developing in no less than 28 countries.
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- Dybtsyna, Elena, et al.
(författare)
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The rhetoric and practice of business research collaboration among high north universities
- 2019
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Ingår i: Barents Studies. - : Lapin yliopisto. - 2324-0652. ; 6:1, s. 87-104
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Tidskriftsartikel (refereegranskat)abstract
- International research collaboration and business development in the High North have become hot topics at the governmental policy level in many countries. However, despite prior research on co-operation between Nordic universities, there is a dearth of research specifically addressing the practice of High North research collaboration in business studies. We ask the following research question: how are the prospects for business research collaboration among High North Universities portrayed in national policy documents and to what extent is business research in the High North collaborative in practice? We address this question by analyses and comparisons of publicly available governmental Arctic strategies and bibliographic data on joint publications between researchers from High North universities in Finland, Norway and Sweden. The empirical results reveal diverging yet far-reaching national aspirations at the policy level which do not match the rather modest research collaboration in practice evidenced by our bibliographic data. Our conclusions suggest that the rhetoric of High North business research collaboration and the practice of actual collaboration among High North universities are decoupled from each other. We theorize about explanatory circumstances behind decoupling in the area of research collaboration and provide suggestions for further research.
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- Lendaro, Eva, 1989, et al.
(författare)
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Out of the clinic, into the home: The in-home use of phantom motor execution aided by machine learning and augmented reality for the treatment of phantom limb pain
- 2020
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Ingår i: Journal of Pain Research. - 1178-7090. ; 13, s. 195-209
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Phantom motor execution (PME) facilitated by augmented/virtual reality (AR/ VR) and serious gaming (SG) has been proposed as a treatment for phantom limb pain (PLP). Evidence of the efficacy of this approach was obtained through a clinical trial involving individuals with chronic intractable PLP affecting the upper limb, and further evidence is currently being sought with a multi-sited, international, double blind, randomized, controlled clinical trial in upper and lower limb amputees. All experiments have been conducted in a clinical setting supervised by a therapist. Here, we present a series of case studies (two upper and two lower limb amputees) on the use of PME as a self-treatment. We explore the benefits and the challenges encountered in translation from clinic to home use with a holistic, mixed-methods approach, employing both quantitative and qualitative methods from engineering, medical anthropology, and user interface design. Patients and Methods: All patients were provided with and trained to use a myoelectric pattern recognition and AR/VR device for PME. Patients took these devices home and used them independently over 12 months. Results: We found that patients were capable of conducting PME as a self-treatment and incorporated the device into their daily life routines. Use patterns and adherence to PME practice were not only driven by the presence of PLP but also influenced by patients’ perceived need and social context. The main barriers to therapy adherence were time and availability of single-use electrodes, both of which could be resolved, or attenuated, by informed design considerations. Conclusion: Our findings suggest that adherence to treatment, and thus related outcomes, could be further improved by considering disparate user types and their utilization patterns. Our study highlights the importance of understanding, from multiple disciplinary angles, the tight coupling and interplay between pain, perceived need, and use of medical devices in patient-initiated therapy.
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