| 1. |
- Ponti, Marisa, 1959, et al.
(författare)
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Getting It Right or Being Top Rank: Games in Citizen Science
- 2017
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Ingår i: CSA 2017.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The use of games in citizen science is growing, but can create tension as these can be seen as incompatible areas of activity. For example, the motivations of winning a game and the scientific pursuit of knowledge may be seen as contrary. Over a one-year period, we conducted a virtual ethnographic study of the public forums of two online projects, Foldit and Galaxy Zoo (GZ). The first where gaming is an explicit design feature and the second where it is not. The aim was to give a nuanced view of how participants topicalize and respond to tension between games and science. Thematic analysis of the forum posts showed that participants in the two projects respond differently to the tension. GZ participants highlighted the value of sharing and openness to sustain a healthy community while Foldit participants expressed concern for the project becoming the exclusive playground of an ever-decreasing elite group. For example, leaderboards were portrayed as antithetical to a healthy community in GZ as scores bring unhealthy competition and adverse effects on scientific validity. By contrast, the notion that ranking performance could be antithetical to the spirit of science was not part of the established community repertoire for Foldit. By unpacking participant responses to the tension between games and science, our study highlights that citizen science projects using games are not just about fun. In order to enrol and retain volunteers, they must also recognize and manage the implicit normative scientific ideals participants bring with them to a project.
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| 2. |
- Ponti, Marisa, 1959, et al.
(författare)
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Getting it Right or Being Top Rank: Games in Citizen Science
- 2018
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Ingår i: Citizen Science - Theory and Practice. - : Ubiquity Press, Ltd.. - 2057-4991. ; 3:1, s. 1-10
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Tidskriftsartikel (refereegranskat)abstract
- The use of games in citizen science is growing, but can create tension as gaming and science can be seen as incompatible areas of activity. For example, the motivations for winning a game and scientific pursuit of knowledge may be seen as contrary. Over a one-year period, we conducted a virtual ethnographic study of the public forums of two online citizen science projects, Foldit and Galazy Zoo, the first a project in which gaming is an explicit design feature and the second in which it is not. The aim was to provide a nuanced view of how participants topicalize and respond to tensions between gaming and science. Thematic analysis of discussion forum posts suggests that participants in the two projects respond differently to the tension. By unpacking participant responses to the tension between games and science, our study highlights that citizen science projects using games are not just about fun. To enroll and retain volunteers, these projects also must recognize and manage the implicit normative scientific ideals that participants bring with them to a project. We further conclude that ideals of science embraced by citizen scientists appear to influence the reasons why they participate, either emphasizing equality, like in Galazy Zoo, or meritocracy, like in Foldit.
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| 3. |
- Bengtsson, Ulrika, et al.
(författare)
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Developing an interactive mobile phone self-report system for self-management of hypertension. Part 1: Patient and professional perspectives
- 2014
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Ingår i: Blood Pressure. - : Informa UK Limited. - 0803-7051 .- 1651-1999. ; 23:5, s. 288-295
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Tidskriftsartikel (refereegranskat)abstract
- Low adherence remains a struggle in hypertension management, despite improvement efforts. Presuming that increased patient participation is a possible approach, we collaborated with patients and healthcare professionals to design a self-report system to support self-management. The study aimed to explore and describe relevant aspects of hypertension and hypertension treatment, for use in the development of an interactive mobile phone self-report system. It further aimed to suggest which clinical measures, lifestyle measures, symptoms and side-effects of treatment would be meaningful to include in such a system. Five focus group interviews were performed with 15 patients and 12 healthcare professionals, and data was analysed using thematic analysis. Patients suggested trust, a good relationship with caregivers, and well-being as important aspects of hypertension self-management. Furthermore, they regarded blood pressure, dizziness, stress, headache and tiredness as important outcomes to include. Patients sought to understand interconnections between symptoms and variations in blood pressure, whilst healthcare professionals doubted patients’ ability to do so. Healthcare professionals emphasized accessibility, clear and consistent counselling, complication prevention and educational efforts. The study presents aspects of importance for follow-up to understand the interplay between blood pressure and daily life experiences for patients with hypertension. Read More: http://informahealthcare.com.ezproxy.ub.gu.se/doi/abs/10.3109/08037051.2014.883203
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| 4. |
- Bina, Pavel, et al.
(författare)
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Awareness, views and experiences of Citizen Science among Swedish researchers — two surveys
- 2021
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Ingår i: JCOM - Journal of Science Communication. - : Sissa Medialab Srl. - 1824-2049. ; 20:06
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Tidskriftsartikel (refereegranskat)abstract
- In 2021 Sweden’s first national portal for citizen science will be launched to help researchers practice sustainable and responsible citizen science with different societal stakeholders. This paper present findings from two surveys on attitudes and experiences of citizen science among researchers at Swedish universities. Both surveys provided input to the development of the national portal, for which researchers are a key stakeholder group. The first survey (n=636) was exclusively focused on citizen science and involved researchers and other personnel at Swedish University of Agricultural Science (SLU). 63% of respondents at SLU had heard about citizen science (CS) prior to the survey; however a majority of these (61%) had not been involved in any CS initiative themselves. Dominant reasons for researchers choosing a CS approach in projects were to enable collection of large amounts of data (68%), improving the knowledge base (59%), improving data quality (25%), promote participants’ understanding in research (21%) and promote collaboration between the university and society (20%). The other survey (n=3 699) was on the broader topic of communication and open science, including questions on CS, and was distributed to researchers from all Swedish universities. 61% of respondents had not been engaged in any research projects where volunteers were involved in the process. A minority of the researchers had participated in projects were volunteers had collected data (18%), been involved in internal or external communication (16%), contributed project ideas (14%) and/or formulated research questions (11%). Nearly four out of ten respondents (37%) had heard about CS prior to the survey. The researchers were more positive towards having parts of the research process open to citizen observation, rather than open to citizen influence/participation. Our results show that CS is a far from well-known concept among Swedish researchers. And while those who have heard about CS are generally positive towards it, researchers overall are hesitant to invite citizens to take part in the research process.
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| 5. |
- Bragesjö, Fredrik, 1974, et al.
(författare)
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Continuity or Discontinuity? Scientific Governance in the Pre-History of the 1977 Law of Higher Education and Research in Sweden
- 2012
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Ingår i: Minerva. A Review of Science, Learning and Policy. - : Springer Science and Business Media LLC. - 0026-4695. ; 50:1, s. 65-96
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Tidskriftsartikel (refereegranskat)abstract
- The objective of this paper is to balance two major conceptual tendencies in science policy studies, continuity and discontinuity theory. While the latter argue for fundamental and distinct changes in science policy in the late 20th century, continuity theorists show how changes do occur but not as abrupt and fundamental as discontinuity theorists suggests. As a point of departure, we will elaborate a typology of scientific governance developed by Hagendijk and Irwin (2006) and apply it to new empirical material. This makes possible a contextualization of the governance of science related to the codification of the "third assignment" of the Swedish higher education law of 1977. The law defined the relation between university science and Swedish citizens as a dissemination project, and did so despite that several earlier initiatives actually went well beyond such a narrow conceptualisation. Our material reveals continuous interactive and rival arrangements linking the state, public authorities, the universities and private industrial enterprises. We show how different but coexisting modes of governance of science existed in Sweden during the 20th century, in clear contrast with the picture promoted by discontinuity theorists. A close study of the historical development suggests that there were several periods of layered governance when interactions and dynamics associated with continuity as well as discontinuity theories were prevalent. In addition, we conclude that the typology of governance applied in the present paper is fruitful for carrying out historical analyses of the kind embarked upon in spite of certain methodological shortcomings.
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| 6. |
- Bragesjö, Fredrik, 1974, et al.
(författare)
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Forskarutbildningar med STS-relevans i Sverige: ett utökat samarbete? : En session vid STS-mötet i Linköping i mars 2011 om nationellt och nordiskt forskarutbildningsamarbete
- 2011
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Ingår i: Konferensbidrag/session vid STS-konferensen vid Linköpings universitet, 22-23 mars 2011.
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Konferensbidrag (refereegranskat)abstract
- På flera platser runt om i Sverige finns forskarutbildningar med STS-inriktning. Med få undantag är miljöerna ganska små; doktorandantagningarna är ofta avhängiga tilldelning av fakultetsmedel eller externa projektanslag som både kan variera mycket i frekvens och omfattning. Vid Humanistiska fakulteten i Göteborg har till exempel utlysningen av doktorandtjänster ställts in av ekonomiska skäl vid ett par tillfällen de senaste åren. Även om regeringen säger sig ha för avsikt att förstärka forskningen i Sverige, är det osäkert hur mycket av dessa medel kommer STS-miljöerna till del. Ett utökat samarbete och utbyte mellan de olika miljöerna skulle avgjort, menar vi, stärka både forskarutbildningarna och STS-forskningen generellt i landet på längre sikt. På denna workshop vill vi dels inventera intresset för ett breddat och fördjupat samarbete på forskarutbildningsnivå, dels diskutera innehållet och formerna för ett sådant samarbete.
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| 7. |
- Bragesjö, Fredrik, 1974, et al.
(författare)
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Forskningsrådsnämndens uppgång och fall: om ”governance” inom en gränsorganisation
- 2011
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Ingår i: Konferensbidrag till STS-konferensen vid Linköpings universitet, 22-23 mars 2011..
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Konferensbidrag (refereegranskat)abstract
- Tiden efter 1968 stod relationen mellan vetenskapen och samhället i fokus både i den allmänna debatten och på en forskningspolitisk nivå. I flera utredningar granskades forskningen och den högre utbildningen (U 68, FUN, FRU, H 75). En brännande fråga rörde samhällets inflytande och styrning av forskningen: borde forskningsrådens vetenskapliga ledamöter kompletteras med representanter från samhällets andra intressenter? Forskningsrådsnämnden (FRN) skapades i mitten av 1970-talet och verkade i cirka 25 år, och var en tydlig institutionell kompromiss. Vid sidan om, eller rättare: på gränsen mellan, de traditionella forskningsråden och politiska fora skapades en organisation där ledamöterna utgjordes av både vetenskapsmän och politiker. FRN fick bland annat ansvar på tvärvetenskap, samhällsinriktad forskningsinformation, finansiering av dyr vetenskaplig utrustning och så småningom genusforskning. Medan detta var en lösning på frågan om samhällsinflytande som de flesta aktörer kunde acceptera, blev FRN så småningom en omstridd organisation. I början av 1990-talet kom kritiken från både politiker och forskare, och i samband med den stora rådsomvandligen vid millennieskiftet lades organisationen ner för gott. Vi analyserar FRN genom begreppet ”boundary organization” (Guston 2000), där vi förstår FRN som en institution vars framgång bestod i möjligheten att förena och tillfredsställa intressen inom och utanför vetenskapen. Särskilt uppmärksammas möjligheterna och svårigheterna att fungera som en gränsorganisation i relation till olika ”modes of governance” (Hagendijk och Irwin 2006).
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| 8. |
- Bragesjö, Fredrik, 1974, et al.
(författare)
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Humaniora, demokrati och högskolelagen: om bildningsuppgiftens lagstadgande
- 2009
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Ingår i: Konferenspapper till konferensen ”Humanioras opgaver og humanisternes roller”, Vinterseminar, Nordisk Sommeruniversitet Kreds 5, den 29 mars 2009 i Göteborg.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- 1977 fick Sverige för första gången en högskolelag. I lagen tydliggjordes att högskolor och universitet inte bara ska syssla med utbildning och forskning. Som en tredje uppgift inkluderades följande paragraf: ”Till verksamheten inom högskolan skall höra att sprida kännedom om forskning och utvecklingsarbete. Kännedom skall också spridas om vilka erfarenheter och kunskaper som har vunnits och om hur dessa erfarenheter och kunskaper skall kunna tillämpas.” (Svensk författningssamling 1977:218) Vad vi vill diskutera idag är varför vi fick denna formuleringen av högskolelagen. Varför valde lagstiftaren att prioritera vissa aktörer och praktiker, och varför valde man bort andra i den tredje uppgiften? Om vi ska förstå det så måste vi gå tillbaka i historien. Det finns nämligen två traditioner som påverkat hela den här utvecklingen. Vi kan kalla dem för bildningstraditionen och samverkanstraditionen.
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| 9. |
- Bragesjö, Fredrik, 1974, et al.
(författare)
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Optimising public understanding of science in Europe (in chinese)
- 2006
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Ingår i: Felt, U, Stein, JA, (eds) Optimising public understanding of science and technology in Europe (in chinese). - Shanghai : Shanghai popular science press. - 7542736043 ; , s. 529-556
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 10. |
- Bragesjö, Fredrik, 1974, et al.
(författare)
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STS Education in Sweden : STS-utbildning i Sverige: samarbete på forskarnivå
- 2012
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Ingår i: STS Meeting in Stockholm, May 2-‐4, 2012: book of abstracts.
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Konferensbidrag (refereegranskat)abstract
- Starting at last year's STS meeting in Linköping, followed by a workshop in Gothenburg this fall, we will continue the discussions of how we can improve STS (PhD) education in Sweden through deepened collaborations between different STS sections around the country. We need to get the initiative in to a new, implementing phase!
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| 11. |
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| 12. |
- Döveling, Katrin, et al.
(författare)
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“Safe havens”. Online peer grief support and emotion regulation in coping with the loss of a close relative
- 2016
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Ingår i: 6th European Communication Conference (ECREA).
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Konferensbidrag (refereegranskat)abstract
- The loss of a close relative can be a devastating experience, sometimes plunging mourners into deep and intense grief. Furthermore, in most Western societies, a cultural avoidance of talking about death limits the possibilities for coping and adaptation (cf. Brotherson and Soderquist, 2002). It is here, where social media provide new opportunities for sharing and coping, enabling support and aiding in emotion regulation The overall aim of the present study was to analyse and compare international research findings from Germany and Sweden in terms of coping resources and emotion regulation in different online peer grief-support communities. More specifically, what differences or similarities exist? Can such differences and similarities be traced to types of loss, age of mourner, affordances of various online environment or norms for grieving and emotion regulation? Are there more general patterns or traits to be found transcending specific online communities? The study compared current the usage of five different online grief-support communities in Germany (4) and Sweden (1), using both qualitative and quantitative methods. The German data set focused on four different specifically designed bereavement networks, addressing different kinds of mourners. These were examined qualitatively as well as quantitatively in a two-step content analysis (N postings = 1032), generating insight into online-shared grieving processes. The Swedish data set focused on a closed group on Facebook for bereaved parents. Data consisted of a survey (N=54) and semi structured interviews (N=4) with members in the community, as well as continuous observation of patterns of interaction and content analysis of postings in the group. Despite differences in the compared communities’ composition, types of loss and affordances, as well as different methodological approaches, a common pattern of coping and support emerged. Users in both Germany and Sweden expressed a lack of social support or understanding of their needs offline. A common underlying need to communicate with peers who share similar loss and experience was emerged. Online support communities need to be understood as important resources for coping with grief and emotion regulation. The communities seem to complement and compensate for the lack of social support and insufficiency of the health care system by providing constant, immediate support from a large number of peers. By sharing their thoughts and emotions online, members learn vital aspects of coping with grief, and engage in active emotion regulation. Mourners also receive practical advice for everyday situations and on more philosophical, existential matters. In such a way, the communities offer safe havens in which the members can express their grief and all emotions involved. In both the German and the Swedish communities, data show that over time mourners evolve from ”takers” of support to ”givers” within their respective communities. Furthermore, the communities offer possibilities for the members to compare experiences, which seems to be a prerequisite for learning to cope with grief and emotion regulation. The implications of this study for both bereaved individuals and practitioners in health care are discussed.
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| 13. |
- Elzinga, Aant, 1937, et al.
(författare)
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Between evidence, persons, and things: Travelling, affordance and governance of expertise in personalized medicine
- 2011
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Ingår i: Konferensbidrag till the 4S Conference in Cleveland, Ohio, November 2-5, 2011.
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Konferensbidrag (refereegranskat)abstract
- The paper delineates some recent work being developed on pertinent dimensions in a perceived gap between evidence-based medicine and personalized medicine. The approach is mainly conceptual. The approach is informed by investigations of ramifications of a recent movement from patient-based medicine to individualization and personalisation in the management of health care. In addition it takes account of the role of new and emerging technologies in efforts to bridge the cited gap with special reference to three dimensions of expertise: we refer to these as the travelling, governance and affordance of expertise. Expertise then is taken to include inscription of rules and procedures in monitoring devices. Questions asked are: what kinds of technologies typically come into play; what modes of governance are therewith enhanced or, respectively, marginalized; what repertories of “objectivity” are preferred or shaped when expertise is transported and embedded in technologies? Closely related is the question of what types of authority that may be associated with these “epistemologies” ranging from the charismatic to the institutional and technological? Given our analytic tri-focal lens of travelling, affordance and governance of expertise, we expect to elucidate the ways in which evidence-based and personalized medicine interact and construct identities of patients, staff, and next of kin. The purpose of the paper is, first, to invite comments on the conceptual take and, second, to receive viewpoints on future directions of the research program.
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| 14. |
- Elzinga, Aant, 1937, et al.
(författare)
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Optimising Health In Europe Through Evidence-Based And Personalized Medical Practices: The Use Of Expertise, Standards And Technologies In Health Promotion And Preventive Medicine : A report written for the SMEC Seminar led by Professor Margareta Hallberg at the Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Sweden
- 2011
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- This is the working title of a workshop planned to take place in April 2012 as a step towards developing a grant proposal to meet the criteria of an appropriate EU framework call in the area of health policy and governance. The core idea is an interest in the use of expertise, standards and technologies on the one hand and on the other hand variations in adherence of patients to prescribed treatment - typically across a number of different lifestyle-related diseases or ailments, in comparison between a number of European countries. The focus would, more specifically, be on two aspects: evidence-basing of relevant treatments and patient adherence to expert recommendations for preventive purposes in the cases of the disease categories selected. At this point the selection of disease categories to focus on in the workshop and the grant proposal is left open; the following are only named as examples: irritable bowel syndrome (IBS), hypertension and cardiovascular diseases, high cholesterol, overweight/obesity, Type 2 diabetes and certain infectious diseases. This is in view of the urgent call to action issued by the WHO Regional Office for Europe in its Summary Report 2005 on European Health which identifies the high risks to health, related to tobacco and alcohol consumption, high blood pressure and cholesterol, overweight, low fruit and vegetable intake, and physical inactivity. The report urges that these health risks need to be dealt with in order to help prevent ischaemic heart disease, unipolar depressive disorders, cerebrovascular disease, alcohol-use disorders, chronic pulmonary disease, lung cancer and road traffic injury. The summary has a special focus on children’s health, because health in childhood determines health throughout life and into the next generation (WHO 2005). The present initiative comes from a group of scholars at the University of Gothenburg who have over the years done research that falls within the realm of science and technology studies (STS). Coming out of an amalgam of studies of scientific controversies, the role of expertise, critical studies of public understanding of science, scientific citizenship and governance issues, and earlier work in the field of science policy studies, several members of the group have now come to focus particularly on Studies of Medicine, Expertise and Controversies (SMEC). For more information about the group, see Appendix II and http://www.flov.gu.se/english/research/.
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| 15. |
- Ess, Charles, et al.
(författare)
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INTERNET RESEARCH ETHICS: NEW CONTEXTS, NEW CHALLENGES – NEW (RE)SOLUTIONS?
- 2015
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Ingår i: AoIR Selected Papers of Internet Research.
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Konferensbidrag (refereegranskat)abstract
- Especially the second set of AoIR guidelines for research ethics (Markham and Buchanan 2012) demonstrate that progress can be made in laying out useful approaches for analyzing and resolving at least very many of emerging ethical challenges facing Internet researchers. But of course, new research possibilities, contexts, and approaches continue to issue in sometimes strikingly novel ethical difficulties that may challenge in turn more established frameworks and guidelines. Critical to the ongoing development of Internet Research Ethics (IRE), then, is to bring forward new cases and difficulties that, as in previous cycles of guideline development, will serve as fruitful foci for reflection and deliberation that then contribute to both improving our abilities to respond to such new challenges and, eventually, the articulation of subsequent guidelines. Hence, our roundtable showcases important examples of contemporary research ethics issues – most especially as these are evoked by new research contexts and foci, and, in several instances, new methodological approaches. Our goal is to evoke dialogue and collective reflection on how these issues may be best resolved, and to thereby lift them up as reference points within and constituents of the evolving development of IRE. Following brief presentations from each of our contributors, our two respondents, both long-time and prominent members of the AoIR ethics committee, will offer comments before then opening the roundtable to discussion with the audience.
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| 16. |
- Hallberg, Inger, 1956, et al.
(författare)
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Phases in development of an interactive mobile phone-based system to support self-management of hypertension
- 2014
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Ingår i: Integrated blood pressure control. - : Dove Medical Press. - 1178-7104. ; 7, s. 19-28
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Tidskriftsartikel (refereegranskat)abstract
- Hypertension is a significant risk factor for heart disease and stroke worldwide. Effective treatment regimens exist; however, treatment adherence rates are poor (30%–50%). Improving self-management may be a way to increase adherence to treatment. The purpose of this paper is to describe the phases in the development and preliminary evaluation of an interactive mobile phone-based system aimed at supporting patients in self-managing their hypertension. A person-centered and participatory framework emphasizing patient involvement was used. An interdisciplinary group of researchers, patients with hypertension, and health care professionals who were specialized in hypertension care designed and developed a set of questions and motivational messages for use in an interactive mobile phone-based system. Guided by the US Food and Drug Administration framework for the development of patient-reported outcome measures, the development and evaluation process comprised three major development phases (1, defining; 2, adjusting; 3, confirming the conceptual framework and delivery system) and two evaluation and refinement phases (4, collecting, analyzing, interpreting data; 5, evaluating the self-management system in clinical practice). Evaluation of new mobile health systems in a structured manner is important to understand how various factors affect the development process from both a technical and human perspective. Forthcoming analyses will evaluate the effectiveness and utility of the mobile phone-based system in supporting the self-management of hypertension.
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| 17. |
- Hetland, Per, et al.
(författare)
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Denmark, Norway and Sweden : share, make useful and critically discuss : science communication
- 2020
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Ingår i: Communicating science : a global perspective / Toss Gascoigne, Bernard Schiele, Joan Leach, Michelle Riedlinger, Bruce V. Lewenstein, Luisa Massarani, Peter Broks (eds.). - Canberra : Australian National University Press. - 9781760463663 ; , s. 253-278
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Bokkapitel (refereegranskat)abstract
- Modern science communication has emerged in the twentieth century as a field of study, a body of practice and a profession—and it is a practice with deep historical roots. We have seen the birth of interactive science centres, the first university actions in teaching and conducting research, and a sharp growth in employment of science communicators. This collection charts the emergence of modern science communication across the world. This is the first volume to map investment around the globe in science centres, university courses and research, publications and conferences as well as tell the national stories of science communication. How did it all begin? How has development varied from one country to another? What motivated governments, institutions and people to see science communication as an answer to questions of the social place of science? Communicating Science describes the pathways followed by 39 different countries. All continents and many cultures are represented. For some countries, this is the first time that their science communication story has been told.
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| 18. |
- Hård af Segerstad, Ylva, 1969, et al.
(författare)
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A community for grieving: affordances of social media for support of bereaved parents
- 2015
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Ingår i: New Review of Hypermedia and Multimedia. - : Informa UK Limited. - 1361-4568 .- 1740-7842. ; 21:1-2, s. 25-41
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this paper was to study bereaved parents' use of a closed peer grief support community on Facebook and the features of the community that are important to them. The death of a child is an uncomfortable subject in most contemporary societies. This limits the exploration of experiences and possibilities for coping with grief. However, with the introduction of social media, this has changed. Theoretical perspectives on parental grief recognizing the importance of continued relational bonds with the lost child are used, together with the ontological assumption that social media enhance the dissolving of private/public and time/space. This study is based on questionnaire, interviews, and content from the closed peer grief support community, to which the research team has insider access. The community encompasses a diverse range of experiences and stages of grief, independent of the time elapsed since the loss of a child. Bereavement of children of all ages and from all conceivable causes of death is distributed among the members. The results show how the affordances of social media become vital resources for coping with grief in ways not available previously, comprising aspects of the closed nature of the group, shared experiences, time, and accessibility.
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| 19. |
- Hård af Segerstad, Ylva, 1969, et al.
(författare)
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A Place to Grieve: Online Social Networks as Resources for Coping with the Loss of a Child
- 2014
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Ingår i: The First International Death Online Research Symposium, April 9th-10th, 2014, University of Durham, UK.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The death of a child is said to be the most disruptive of all possible losses individuals may experience in life (Schwab, 1990). Parental grief has been recognized as the most intense and overwhelming of all forms of grief (Freud,1917; Mitchell et al., 2012; Parkes, 1988; Rando, 1985, 1986; Rees 1997). Research has indicated that bereaved parents’ grief process is unique and may be life-long (Klass et al., 1996; Sormanti & August 1997). Theoretical perspectives on parental grief have undergone a paradigm shift over the last century (Davies, 2004). Traditional understandings advocated breaking bonds with the deceased child as a means of resolving grief, pathologizing what new understandings recognize as important in coping with the loss of a child, i.e. to continue bonds and holding-on. The latter often counteracts with social norms and expectations by society. The death of a child is an extremely uncomfortable subject in most western societies and often avoided in conversation. This avoidance limits the exploration of experiences and possibilities for coping with grief that might be shared in a culture (Brotherson & Soderquist, 2002). Consequently, there are not many places or situations where grieving parents may talk about their dead children, their experiences and feelings in trying to cope with their loss. With the introduction of social media this has changed. This paper presents results from a unique empirical study of bereaved parents’ use of a closed peer support group on Facebook. The study is based on a questionnaire, interviews and content from the closed group, to which the research team has insider access. Moreover, the community in the closed group encompasses a diversity of experiences and stages of grief independent of time since the loss of a child. Bereavement of children of all ages and from all conceivable causes of death are distributed among the members, who also represent a high variety of demographic backgrounds. Furthermore, the community under study is large enough to allow for both quantitative and qualitative studies (732 members and counting). Results show that the technological affordances of online social networks offer means for bereaved parents to continue bonds with their deceased children and may act as vital resources for coping with grief in ways that has not been available previously. Closed communities online offer a move from individual pathologized holding-on to emerging social norms for holding-on, supporting the particular and life-long needs of grieving parents in unprecedented ways.
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| 20. |
- Hård af Segerstad, Ylva, 1969, et al.
(författare)
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Bereaved parents’ online grief communities: de-tabooing practices or grief-ghettos?
- 2015
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Ingår i: The Second International Death Online Research Symposium, 17-18 August, 2015, Kingston University, London, UK..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The death of a child is a near taboo subject in most contemporary societies. This limits bereaved parents’ means for coping with their loss. However, with the introduction of social media, this has changed. In this paper, we present preliminary results from case studies of a number of different types of Danish and Swedish online grief communities for bereaved parents. The main differences between these communities are related to the conditions for participation and sharing: open or closed, moderated or non-moderated communities. The main questions focus on how development of practices and norms for grieving and mourning online are related to the particular conditions for participation. The different types of grief communities under study are a closed and an open group on Facebook, an open dedicated memorial website and open discussion groups such as Libero/Pampers etc. We aim at analyzing which kinds of practices are performed and shared in the different forums and how norms and traditions are performed, challenged and negotiated in the various formats. Furthermore, we discuss how these practices are related to dominant ideas of grief in society as such, for instance, in relation to intensity, length etc. Do these practices lead to a softening of prejudices against mourners, i.e. de-tabooing the loss of a child, or do they lead to new biases and misconceptions as displayed in popular media, casting them as grief-ghettos? Finally, we want to reflect on the unique character of these different kinds of empirical material in the study of parental grief work.
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| 21. |
- Hård af Segerstad, Ylva, 1969, et al.
(författare)
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Learning to Cope With the the Death of a Child: Grieving Through Social Media
- 2015
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Ingår i: DIGITAL EXISTENCE: Memory, Meaning, Vulnerability, 26-28 October, 2015, Sigtuna Foundation, Sweden.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The death of a child has been recognised as the most devastating of all losses individuals may experience in life (Riches & Dawson, 2000; Schwab, 1990). Surviving the death of one’s child may be viewed as a continuous process of adapting to life as it “came-to-be” without the child. Research has shown bereaved parents’ needs to preserve bonds with their deceased child and that they never “let go”, but keep on maintaining the role of parenthood (Christensen & Sandvik, 2014), aiming to reach an existential “new normal” for the parent, recognizing, accepting, and adjusting to the loss of their child (Harper, 2014). Historically, theoretical frameworks of grief have regarded continued connections with the deceased as an abnormal, pathological way to deal with bereavement (Scholtes & Browne, 2014). Klass et al. (1996) offered a different perspective of this model of grief, proposing that the continuing bond that the bereaved maintain with the deceased are an adaptive part of the grieving process (Scholtes & Browne, 2014). However, in most Western societies the death of a child is a social taboo, surrounded by silence and avoidance (Fitzgerald 1994; Brotherson & Soderquist, 2002). Parental grief may be neither shared nor understood by those un-bereaved (Riches & Dawson, 2000; Brotherson & Soderquist, 2002; Dyregrov, 2002; Davies, 2004; Mitchell et al., 2012). Norms and expectations in society dictate that bereaved parents should not display their grief and get over it as soon as possible. This limits the exploration of experiences and possibilities for coping with grief (Brotherson & Soderquist, 2002), as well as restricting the possibilities for empirical research. However, with the introduction of social media this is changing. New possibilities are now offered for bereaved parents to engage in online grief support communities. This paper presents results from a study of bereaved parents’ use of a closed peer grief support group on Facebook. The study is based on a questionnaire, interviews and content from the closed group. The community in the closed group encompasses a diversity of experiences and stages of grief independent of time since the loss of a child. Bereavement of children of all ages and from all conceivable causes of death are distributed among the members. Furthermore, the community under study is large enough to allow for both quantitative and qualitative studies (1274 members at the time of writing, growing by approx.. 10-15 members per week). Results show that the technological affordances of social media online offer means for bereaved parents to continue bonds with their deceased children and may act as vital resources for coping with grief in ways that has not been available previously. The potential of online grief support has hitherto not been recognized enough for its possibilities to influence health care and attitudes towards the loss of a child (Harper et al., 2014). This project will contribute to theoretical understanding of parental grief, through the opportunity to longitudinally study the everyday interactions of bereaved parents in online resources for grief support. It will contribute strongly to the methodological and ethical challenges of studying digital and social media. Social media is an important, but under-researched, context for the formation of culturally and socially normative non-clinical practices of bereavement.
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| 22. |
- Hård af Segerstad, Ylva, 1969, et al.
(författare)
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Opportunities and Challenges of Studying Closed Communities Online: Digital Methods and Ethical Considerations
- 2015
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Ingår i: Internet Research 16.0: Digital Imaginaries, The Sixteenth International Conference of the Association of Internet Researchers, Phoenix, Arizona, USA, 21-24 October, 2015..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- In this presentation, we will discuss the methodological and ethical challenges of studying a closed community of bereaved parents on Facebook. The community that we are focusing on now has more than 1200 members, producing large amounts of data. We aim to collect data both on the aggregated level of the community and to follow individual trajectories, using both quantitative and qualitative methods. Each of the stages of data collection and analysis gives rise to a set of methodological and ethical challenges. Closed communities for sensitive topics such as this have to a large extent been inaccessible to researchers. What gives us access to the data is the fact that one of the researchers is a member in the closed community and that the grief support association organizing the closed group emphatically backs up the research project. This means that the researcher being a member of the community will act and have the function of being an “ethical representative” for the other researchers in the multidisciplinary project. Technically, we have tools and expertise to collect large amounts of data over a long period of time by scraping snapshots of content in the community. The data collection software will be configured to immediately replace real names with anonymized identifier strings. The content will then be processed using Natural Language Processing (NLP) tools for automatically categorising, understanding and summarising text and detecting emotions and sentiment. The different stages in the research require different types of expertise from the research staff, and for the implementation of the project we are dependent on each and all of our collective competencies. One of the ways to address challenges on different levels throughout the project will be to use digital methods to give the staff different access levels to the data in combination with automatically anonymizing and analysing the data. However, where is the ethical challenge located when delegating research tasks to machines and algorithms? In the construction of algorithms? In deploying the software? In interpreting results? This opens up questions of how research with digital methods configure ethical problems in unforeseen ways. Furthermore, no matter whether we focus on the aggregated level or on the individual, we end up with large amounts of data collected in this context over time. Experience from our pilot study show that it is fairly straightforward to get informed consent to follow individual trajectories. However, given the amounts of data each individual is likely to produce over time in interaction with other community members, what are the implications for informed consent in such a sensitive area? For better or worse, our study represents a kind of worst-case scenario for several reasons. The ethical and methodological challenges that arise when digital methods, i.e. technological possibilities for doing research, might clash with codes of research conduct as well as with human concern. In this presentation, we will focus on a number of issues that arise from these methodological and ethical points of departure.
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| 23. |
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| 24. |
- Hård af Segerstad, Ylva, 1969, et al.
(författare)
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Studying closed communities online: Digital methods and ethical considerations beyond informed consent and pseudonymity
- 2016
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Ingår i: Internet Research 17.0: Internet Rules!, The Seventeenth International Conference of the Association of Internet Researcher Berlin, Germany, 5-8 October, 2016.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- In this study, we use a particular case study focusing on a closed group for bereaved parents on Facebook for discussing practical ethical challenges associated with studying communities on social media. These challenges often stand in contradiction to the rich empirical material that is possible to obtain with digital methods. The particular concerns of this study offers opportunities to address issues that have general implications for digital methods and ethical considerations of studying social media. The study illustrates the danger of simplifying general ethical concerns without grounding them in the practicalities and possibilities of digital environments that give off more data than asked for by the research questions at hand. When digital methods meet digital environments, empirical data can be created that goes beyond the intention and scope of the researchers. The richness in data has an appeal to researchers that wish to work inductively using for example data-mining techniques to explore unexpected connections and patterns beyond conventional hypothesis-driven research with strictly defined research questions. This way, the data acquires a form of “ethical agency”, as it has to be managed and secured beyond what was initially expected. This requires both special technical and ethical considerations. The general assumption is that ethical and methodological challenges arise when new technological possibilities for doing research clash with established codes of research conduct, as well as with concern for the participating human subjects. For several reasons, this particular case study can be considered a worst-case scenario. However, it also offers opportunities to discuss and address current issues of ethical concerns regarding empirical, theoretical and methodological aspects of exploring social media.
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| 25. |
- Jönsson, Mari, et al.
(författare)
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Inequality persists in a large citizen science programme despite increased participation through ICT innovations
- 2024
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Ingår i: Ambio: A Journal of Environment and Society. - 0044-7447 .- 1654-7209. ; 53:1, s. 126-137
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Tidskriftsartikel (refereegranskat)abstract
- Biological recording is a prominent and widely practised form of citizen science, but few studies explore long-term demographic trends in participation and knowledge production. We studied long-term demographic trends of age and gender of participants reporting to a large online citizen science multi-taxon biodiversity platform (www.artportalen.se). Adoption by user communities and continually developing Information and Communications Technologies (ICTs) greatly increased the number of par- ticipants reporting data, but profound long-term imbalances in gender contribution across species groups persisted over time. Reporters identifying as male dominated in numbers, spent more days in the field reporting and reported more species on each field day. Moreover, an age imbalance towards older participants amplified over time. As the first long-term study of citizen participation by age and gender, our results show that it is important for citizen science project developers to account for cultural and social developments that might exclude participants, and to engage with under- represented and younger participants. This could facilitate the breadth of engagement and learning across a larger societal landscape, ensure project longevity and biodiversity data representation (e.g. mitigate gender bias influence on the number of reports of different species groups).
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