| 1. |
- Lochan, Ruth
(författare)
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Technology and the Internet as a key component in psychosocial care of Somatic diseases
- 2012
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Ingår i: <em>AMCIS 2012 Proceedings</em>. - : Association for Information Systems. ; , s. paper 18-
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Konferensbidrag (refereegranskat)abstract
- People are living longer and with aging come an increase in somatic diseases and possible psychological distress. There is an increased burden on health care globally to provide adequate psychosocial care or support for those most in need. The result from a literature review shows that current research is investigating how telemedicine, in particular the internet, can be used to assist in providing psychosocial care. The numbers of publications related to this area have steadily increased since 2003.However, the research is heavily focused on cancer, yet there are other prevalent and common somatic diseases that merit equal attention. More research and real-world implementation is urgently needed. Some of the challenges to using technology and the internet have been identified and the paper concludes with brief reflections on ways to increase the use of telemedicine in providing psychosocial care.
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| 2. |
- Lochan Winton, Ruth Alicia
(författare)
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Talk through IT : Using Common Ground to build Bridges with Weak Ties in the Design of Online Psychosocial Support
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- There is growing interest in applying information and communication technology (ICT) in healthcare. The attention to ICT stems from several factors: costs of healthcare, high prevalence of somatic diseases, longer life expectancy and technological advancements. The quest to meet the growing healthcare needs has led authorities to allocate resources to develop technological solutions. Although this research investment is helpful for the information technology sector, these projects face challenges in working with multidisciplinary teams, recruiting participants and moving research to practice. This dissertation investigates the potential of ICT use in psychosocial support communication designed for people with emotional distress associated with a somatic disease (PEDASDs). The research aims to deliver design principles (DPs) for these ICTs, for three stakeholder groups: nurses, therapists and PEDASDs. The DPs focus on communication between these stakeholder groups and not on the overall ICT design. An interpretative approach was adopted to investigate the stakeholders’ unique ICT requirements. This method allows insights into the stakeholder’s world. Three studies, using semi-structured interviews, at oncology facilities in two healthcare system models (Trinidad & Tobago and Sweden), provide the empirical data. The stakeholders revealed not only their communication support needs but also other issues including the practical distresses of living with a chronic disease, limited support, lack of information, unwillingness to associate with other PEDASDs, professionalism between healthcare providers and disconnected healthcare services. Common ground, bridges and weak ties provide the theoretical framework to explore the findings. Eight DPs emerged from the studies: the healthcare system model, need to educate the stakeholders, ICT customisation, support of stakeholders’ information needs, allow access to external resources, support multidisciplinary team communication, support for self-care and support for significant others. The findings could potentially serve as a guide for ICT projects that develop artefacts for psychosocial support and provide a theoretically grounded understanding of stakeholder communication and relationships. The potential for future work includes investigating the issues of legislation and ethics, studying the needs of significant others, exploring the potential for ICTs in other healthcare system models (particularly the out-of-pocket health system) and examining the impact of social media on psychosocial support.
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| 3. |
- Nicolas, Aude, et al.
(författare)
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Genome-wide Analyses Identify KIF5A as a Novel ALS Gene
- 2018
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Ingår i: Neuron. - : Cell Press. - 0896-6273 .- 1097-4199. ; 97:6, s. 1268-1283.e6
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Tidskriftsartikel (refereegranskat)abstract
- To identify novel genes associated with ALS, we undertook two lines of investigation. We carried out a genome-wide association study comparing 20,806 ALS cases and 59,804 controls. Independently, we performed a rare variant burden analysis comparing 1,138 index familial ALS cases and 19,494 controls. Through both approaches, we identified kinesin family member 5A (KIF5A) as a novel gene associated with ALS. Interestingly, mutations predominantly in the N-terminal motor domain of KIF5A are causative for two neurodegenerative diseases: hereditary spastic paraplegia (SPG10) and Charcot-Marie-Tooth type 2 (CMT2). In contrast, ALS-associated mutations are primarily located at the C-terminal cargo-binding tail domain and patients harboring loss-of-function mutations displayed an extended survival relative to typical ALS cases. Taken together, these results broaden the phenotype spectrum resulting from mutations in KIF5A and strengthen the role of cytoskeletal defects in the pathogenesis of ALS.
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| 4. |
- Olsson, Erik, et al.
(författare)
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U-CARE : a research program on psychosocial care via the internet
- 2012
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Konferensbidrag (refereegranskat)abstract
- U-CARE is one of the Swedish government’s strategic research programs atUppsala University. The overarching goal is to promote psychosocial healthamong patients suffering from somatic disease and their significant others by means of self-help programs delivered via an internet platform. Another goal is to reduce costs for individuals and the society caused by emotional distress in response to somatic disease. Professionals within clinical psychology, health economics, and information systems collaborate to reach this goal.Approximately 20% of patients suffering from somatic disease as well as theirsignificant others experience a clinically relevant level of emotional distress in response to disease and treatment. This is in itself alerting, but becomes even moreproblematic since physicians and nurses show low sensitivity and specificityin detecting patients and significant others experiencing a clinically relevant level of distress. This can result in persistent distress causing human suffering as well as costs for individuals and the society.During 2010-2011 an internet platform: www.u-care.se to provide interactive support and cognitive behavioral therapy has been constructed within the U-CARE program. The platform supports, among other things, rule-based unfolding of self-help material for participants, interaction between participants and therapists, interaction within a participant community, and research including a detailed log of participants’ behaviors on the platform. In addition self-help programs of interactive support and cognitive behavioural therapy for adolescents with cancer: U-CARE: TeenCan, adults with cancer: U-CARE: AdultsCan, and adults having had a myocardial infarct: U-CARE: Heart to be provided via www.u-care.se have been constructed.Through a multi-disciplinary and design-oriented approach, the U-CARE program aims at developing new evidence-based knowledge in basic and applied psychosocial health care,and actively promoting its implementation in health care practice as well as in undergraduate and advanced education.
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| 5. |
- Sjöström, Jonas, 1974-, et al.
(författare)
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Mutability Matters : Baselining the Consequences of Design
- 2011
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Konferensbidrag (refereegranskat)abstract
- Artefact mutability has been proposed as an important component of design theory in information systems. Although initial work on establishing a solid foundation for discussing mutability has been reported, conceptual as well as practical uncertainty still prevails. This paper draws on empirical work in a design science research project in the health sector to explore the notion of mutability and provides a novel conceptualization based on four different types of mutability. The study shows that in order to embrace mutability, IS researchers need to establish a sound philosophy of mutability and be open to incorporate theory and best practices from neighbouring fields, perhaps primarily from software engineering.
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| 6. |
- Sjöström, Jonas, 1974-, et al.
(författare)
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Respondent Behavior Logging : An Opportunity for Online Survey Design
- 2013
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Ingår i: Design Science at the Intersection of Physical and Virtual Design. - Springer : Springer Berlin Heidelberg. - 9783642388279 - 9783642388262 ; , s. 511-518
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Konferensbidrag (refereegranskat)abstract
- This work-in-progress paper introduces the concept of Respondent Behavior Logging (RBL), consisting of static and dynamic models that conceptualize respondent behavior when filling in online questionnaires. It is argued that web-based survey design may benefit from logging as a technique for evaluation, since such data may prove useful during re-design of questionnaires. Although other aspects of online surveys have attracted considerable attention both in industry and in literature, how the Web may leverage new and innovative techniques to support survey design is still underexplored. Some preliminary results are reported in the paper, and issues are raised regarding how to appropriately evaluate and demonstrate the qualities of the RBL concept as a means for survey re-design.
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