| 1. |
- Nordgren, Camilla
(författare)
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Komplexet traumatisk ryggmärgsskada - samhällsresurser
- 2006
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Det sammanhållande syftet för föreliggande arbete är att synliggöra och analysera komplexiteten i samhällsresursers tillhandahållande. Organisationen studeras både utifrån vilka samhällsaktörer som existerar och hur dessa är internt organiserade, och vad
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| 2. |
- Nordgren, Camilla
(författare)
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On the need of validating inpatient registers.
- 2008
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1476-5624 .- 1362-4393. ; 46, s. 748-752
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Tidskriftsartikel (refereegranskat)abstract
- Study design:Register study.Objectives:To design and implement a validation process to check the completeness of the Hospital Discharge Register (HDR) held by the Swedish National Board of Health and Welfare.Setting:Sweden.Methods:An accurate traumatic spinal cord injury prevalence group (n=495) was acquired from the Swedish Spinalis Clinic. A register control was performed on the group by raising three questions to check the validity of the HDR: Is an inpatient stay registered in association with the injury date? Is the reported first length of stay plausible, given the level and extent of injury? Are all the anticipated care and/or rehabilitation providers represented in the HDR?Results:For 62% (of 413 cases) the first registered hospitalization date correlated with the injury date. For the other 38%, hospitalization was reported to start between 2 and 8651 days after injury. Considering the level and extent of injury, individuals were reported to have unrealistically short initial hospitalization. The prevalence group visited 42 different hospitals and 47 clinics. Five rehabilitation clinics, though, were not reported.Conclusions:The HDR is a valuable source when conducting epidemiological and health services research. However, using the register without any validation process could, as detected in the investigated diagnosis group, lead to a severe underestimation of the inpatient usage. The study showed that systematic errors could be detected by means of extensive knowledge of the diagnosis group.Spinal Cord advance online publication, 13 May 2008; doi:10.1038/sc.2008.42.
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| 3. |
- Nordgren, Camilla
(författare)
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Societal services and traumatic spinal cord injury: A multifaced interaction
- 2006
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The licentiate thesis is based on three papers. The aim of the research is to elucidate and analyze how societal services in practice are made available (or not available) and are utilized (or not utilized) by a group of individuals with traumatic spinal cord injuries (SCI). The first article is an inventory of Swedish societal support and services that one can apply for after a traumatic SCI. Twenty-five such forms are identified, which are primarily administered by two authorities: the local (municipal) authority and the social insurance office. The consumers expressed their frustration with this organization and the feelings of being checked up on and called into question. The second article analyzes how general ethical guidelines are challenged by situated ethics in the design context. This corresponds here to how the intentions that motivate the allocation of societal services are challenged by the experiences of the people directly affected when it comes to treatment, degree of complexity, and the transparency and predictability of the systems. The third article deals with inpatient care utilization by an SCI group in Sweden and the usefulness of this data in surveying the group’s total utilization. In an effort to validate the contents of this database, it became apparent that it was impossible to establish the group’s total inpatient care utilization. The articles also discuss methodological aspects of the surveying and documentation of societal services.
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| 4. |
- Nordgren, Camilla
(författare)
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The Art of Living with a Traumatic Spinal Cord Injury in its relation to Resources and Norms in Swedish Society
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis is to elaborate on the art of living with a traumatic spinal cord injury (SCI) in its relation to resources and norms in Swedish society. The thesis originates in part from a prevalence group of SCI individuals and is based on four studies. One is longitudinal and register based, and one is interview based. A paper on “ethics in the making” elaborates how general versus situated ethics might influence design. A norm perspective is applied in another study highlighting the double sets of social norms via narratives in the context of a severe disability. Through these approaches, I hope to open up an area in which little or no research has previously been carried out. A traumatic spinal cord injury is today not curable and commonly leads to a significant, permanent disability with a risk for severe complications. Living with a traumatic spinal cord injury poses, beside all the medical implications, a wide range of obstacles and circumstances in daily life that must be dealt with. The need for accessible environments and societal resources is thus obvious; an extensive and lifelong reliance upon such services will typically be established. The complexity of the injury and its effects on physical functions mean that the needs are great. Society provides various supportive services in order to restore social integration, re-establish autonomy, compensate for financial and functional losses and facilitate activities of daily living. Acute care, rehabilitation and readmissions both as inpatient and outpatient services are, of course, of great importance and are cost-consuming. Other services, though, will also be comprehensive due to their repetitive use in a life-perspective. The comprehensive aim of the thesis is formulated in the following sub-purposes: • Identify the spectrum of potentially relevant societal resources after traumatic SCI. • Investigate an incidence population’s use of societal resources including self-rated levels of satisfaction with the application process and resource allocation. • Discuss how general ethical guidelines are challenged by situated ethics in a design context. • Validate an existing inpatient register. • Analyze and discuss how a norm perspective can be utilized to understand why legislation is not sufficient to achieve Swedish disability policy goals. Results show that about 25 separate services are available and that each service has to be applied for separately by the individual. Information about the services was provided by a social worker but still individuals reported ignorance about the existence of various services. Applications were partially or totally rejected. The National Patient Register proved to be lacking information and was thereby validated by raising three questions: Is an inpatient stay registered in association with the injury date? Is the reported first length of stay plausible given the level and extent of injury? Are all the anticipated care and/or rehabilitation providers represented in the register? For 62%, the first registered hospitalization date correlated with the injury date, leaving 38% with a hospitalization that started later. Considering the level and extent of injury, individuals were reported to have unrealistically short initial hospital stays. The prevalence group visited 42 different hospitals and 47 clinics. Five rehabilitation clinics, though, were not reported. The study on double sets of social norms found that the individual’s experience in everyday situations runs contrary to the prevailing, expected norms. This results in the individual not being able to identify with everyone else or to rely on the current set of norms. The discussion elaborates on the time frame needed to perform and interpret longitudinal studies, as well as the impact different disability definitions have on the results. The use of the term “being in need of” in this area and how utilization can be estimated are also considered. The consequences of access to services being dependent on the individual’s initiative are examined. This section also highlights that the perspective of the authorities versus that of the individual (i.e. the lived perspective) are not only separate but different, and that the individual may be seen as a burden.
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| 5. |
- Enquist, Henrik, et al.
(författare)
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Intuition in Design and Emotion – Transforming raw data into conclusions, a meta-analysis of the 2006 Design and Emotion conference papers.
- 2008
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Ingår i: [Host publication title missing]. - 9789881748928
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Konferensbidrag (refereegranskat)abstract
- In any research field the transformation of raw data into conclusions is a critical phase, necessitating a systematic approach. The basic question is: How can I as a (design) researcher corroborate my conclusions? This paper is based on a study of the analytical/interpretative portion of papers published in the Proceedings of the 2006 Design & Emotion Conference. We investigate how the authors present the interpretative process in their papers, such as using specific methods for interpretation and analysis. It became obvious that there were few specific methods for interpretation mentioned in the Conference papers studied, though there was a wide range of methodological approaches from theoretical and statistical to purely qualitative. Notably, most papers did not mention any method at all. The issue of interpretation is certainly not new, but in the light of the topic of design for emotions, design (research) by emotions or intuition should be discussed.
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| 6. |
- Jönsson, Bodil, et al.
(författare)
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Design side by side
- 2006
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Bok (övrigt vetenskapligt/konstnärligt)abstract
- The starting point for most of what is written here is people with disabilities. Situations of great difficulty need to be highly prioritized, for their own sake and also because that which first appears to be “special” sooner or later comes to benefit so
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| 7. |
- Jönsson, Bodil, et al.
(författare)
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Ethics in the Making
- 2005
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Ingår i: Design Philosophy Papers. - Queensland, Australia : Team D/E/S. - 1448-7136. ; :4, s. 1-8
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Tidskriftsartikel (refereegranskat)abstract
- Applied ethics in research is no longer regarded as a concern exclusive to the medical field. Exemplars in ethics from other fields such as design are, however, meagre, as are relevant practical and design applied guidelines. The more ethically grounded a given area of research is, the greater the chance it can contribute to long-term, meaningful breakthroughs in knowledge. An improved ethics in design can enable a critical questioning that in turn leads to entirely new research questions.The mere involvement of human subjects and the application of safety provisions in design research do not guarantee it will meet ethical considerations, best practices or standards. The entire complex interaction with users offers intriguing possibilities and risks, or can result in mediocrity in areas such as: preparation and implementation that is worth the research person’s time; respect for users’ contributions; dignified treatment; feedback in an iterative and interactive process with mutual information and inspiration; and products and processes that are truly influenced by the users. This reasoning applies to all, but with special distinction to people who are disabled and elderly. Starting with specific needs as opposed to more general ones (the latter of which result in the necessity for more abstract specifications for the multitudes) can, above and beyond the ethical dimension, also result in increased innovation and effectiveness for society on the whole. Proceeding from the particular to the general is of considerable value, for ethical reasons as well as for sheer effectiveness.Involving persons with a variety of disabilities in product development helps to ensure innovative and useworthy products.[1] One of many prerequisites for ethically sound user involvement is that all participants are aware of the interference taking place in an iterative design process.An elaboration of ethical aspects in design can be valuable for different stakeholders (user organisations, NGOs and the design community) and, of course, for the relevance of resulting products and processes. A more considerate ethical approach could have substantial economical value due to the higher relevance of the results. There has been a considerable increase in the ethical expectations placed on businesses and professions in recent years. Scores of organisations have reacted by developing ethical codes of conduct and professional guidelines to explicitly state their values and principles.[2] Moreover, the drafting of a code of ethics can be seen as an indication of professionalism in an emerging profession.[3]
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| 8. |
- Jönsson, Bodil, et al.
(författare)
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Ethics in the making
- 2005
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Ingår i: Design Philosophy Papers. - : Routledge. - 1448-7136. ; :4
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Tidskriftsartikel (refereegranskat)abstract
- Applied ethics in research is no longer regarded as a concern exclusive to the medical field. Exemplars in ethics from other fields such as design are, however, meagre, as are relevant practical and design applied guidelines. The more ethically grounded a given area of research is, the greater the chance it can contribute to long-term, meaningful breakthroughs in knowledge. An improved ethics in design can enable a critical questioning that in turn leads to entirely new research questions.
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| 9. |
- Jönsson, Bodil, et al.
(författare)
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Människonära design
- 2005
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Bok (övrigt vetenskapligt/konstnärligt)abstract
- Det mesta i den här boken tar sin utgångspunkt i människor med funktionsnedsättningar. Situationer med stora svårigheter behöver en stark prioritering, både för sin egen del och för att det särskilda förr eller senare brukar komma det gemensamma till godo. Boken har två delar. Den första består av tio minst sagt spretiga kapitel som alla visar på att hur svår en situation än är, finns det alltid något man kan göra. Dessa kapitel är nog så innehållsrika men samtidigt lättlästa. De är helt enkelt avsedda att berätta sina historier, rakt upp och ner, varje kapitel för sig. Fullt så lättläst är inte del 2. I den försöker vi visa på teori- och metodbildning som kan underlätta, hålla samman och vidareutveckla. Den delen har också en rikhaltig referenslista för vidare studier.
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| 10. |
- Jönsson, Bodil, et al.
(författare)
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Situated research and design for everyday life
- 2005
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Ingår i: Proceedings of Nordes, Nordic Design Research.
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Konferensbidrag (refereegranskat)abstract
- This paper presents examples of different aspects of design in a disability context with the aim of revealing some of its fundamentals. It particularly emphasizes situated aspects of research: the need for being there, with the users in their daily lives – where the action is.
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