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  • 1.
    Agic, Haris
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
    Hope Rites: An Ethnographic Study of Mechanical Help-Heart Implantation Treatment2012Doctoral thesis, monograph (Other academic)
    Abstract [en]

    This thesis is about cultural aspects of advanced medical technology for treating end-stage heart failure. New medical technologies like mechanical help-hearts save lives, but they also bring new uncertainties, risks, and challenges. Based on nine months of ethnographic field work in a Swedish academic hospital, this study examines the ways of managing uncertainties of end-stage heart failure and of high-tech treatment, and also how these practices tie into the shared understandings of life-threatening chronic illness, the body, and medical technology’s role.

    This study draws on anthropological discussions of healing rituals as an analytical tool to make sense of social and cultural dimensions of mechanical help-heart implantation treatment. Viewed as a ritual, this treatment creates and maintains hope as a virtue through which possibilities of new medical technology are justified as culturally approved ways of handling the uncertainties of severe heart failure and mechanical help-heart treatment. Ultimately, even when treatment is regarded as successful, the patients may be saved but are never really ‘cured’ and remain, thus, permanently tied to the world of medicine. This new mode of existence is characterized by paradoxical permanent transit between uncertainty and hope.

  • 2.
    Andersson, Agneta
    Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Health Sciences.
    Health economic studies on advanced home care2002Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The aim of this thesis was to examine the cost-effectiveness of specific advanced home care and home rehabilitation interventions and to improve economic evaluation methods when applied to advanced home care. This included a comparison of two alternative ways of administering oxygen at home to patients with chronic hypoxaemia, as well as a review of scientific evidence on costs and effects of home rehabilitation after stroke. Also included were studies on prominent methodological issues in advanced home care - the redistribution of care efforts among caregivers and costing of informal care efforts.

    For patients with chronic hypoxaemia, a randomised, controlled trial showed that mobile liquid oxygen was considerably more costly compared to concentrator treatment. However, the treatment effects showed that liquid oxygen had a better impact on patient quality of life. The literature review revealed that the outcomes and costs of home rehabilitation after stroke are equal to those of alternative treatment strategies. Similar results were obtained in a study comparing hospital-based and home-based stroke rehabilitation, which also showed that there is a considerable redistribution of costs between health care providers and social welfare providers. Studies of patients in advanced home care in the county of Östergötland, Sweden, showed that the cost of informal care constitutes a considerable part of the care effort in all costing approaches used. Also, informal care costs were higher among patients who were men, who were younger, who had their own housing and had a cancer diagnosis.

    This thesis reveals that advanced home care interventions can differ regarding costs as well as effects, and thus comparisons between alternative home care interventions must also be performed. Further, redistribution effects are important to consider in evaluations. The cost of informal care is substantial in advanced home care. These costs must be included in evaluations with a societal perspective or else the comparisons will be biased.

    List of papers
    1. Domiciliary liquid oxygen versus concentrator treatment in chronic hypoxaemia: a cost-utility analysis
    Open this publication in new window or tab >>Domiciliary liquid oxygen versus concentrator treatment in chronic hypoxaemia: a cost-utility analysis
    Show others...
    1998 (English)In: European Respiratory Journal, ISSN 1399-3003, Vol. 12, no 6, p. 1284-1289Article in journal (Refereed) Published
    Abstract [en]

    Whether long-term oxygen therapy (LTOT) improves quality of life in chronic hypoxaemia has been questioned. LTOT with an oxygen concentrator (C/C) and gas cylinders for ambulation is considered cumbersome compared to mobile liquid oxygen equipment (L). The hypothesis for this study was that LTOT with liquid oxygen treatment (L) improves patients' health-related quality of life, but that it is also more expensive compared to concentrator (C/C) treatment. A prospective, randomized multicentre trial comparing C/C with L for LTOT was conducted during a six-month period. Fifty-one patients (29 on L and 22 on C/C) with chronic hypoxaemia, regularly active outside the home, participated in the study initially. Costs for oxygen were obtained from the pharmacies. Patient diaries and telephone contacts with members of the healthcare sector were used to estimate costs. Health-related quality of life was measured by the Sickness Impact Profile (SIP) and the EuroQol, instruments at the start and after 6 months. The average total cost per patient for group C/C for the six-month period was US$1,310, and for group L it was US$4,950. Health-related quality of life measured by the SIP instrument showed significant differences in favour of group L in the categories/dimensions of physical function, body care, ambulation, social interaction and total SIP score. In conclusion, liquid-oxygen treatment was more expensive compared to concentrator treatment. However, treatment effects showed that liquid oxygen had a better impact on quality of life.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13751 (URN)
    Available from: 2002-12-19 Created: 2002-12-19
    2. Home rehabilitation after stroke. Reviewing the scientific evidence on effects and costs
    Open this publication in new window or tab >>Home rehabilitation after stroke. Reviewing the scientific evidence on effects and costs
    2000 (English)In: International Journal of Technology Assessment in Health Care,, ISSN 0266-4623, Vol. 19, no 3, p. 842-848Article in journal (Refereed) Published
    Abstract [en]

    OBJECTIVES: The question addressed here is whether home rehabilitation after stroke is better and/or less expensive than the more conventional alternatives, i.e., rehabilitation during inpatient care, day care, and outpatient visits--alone or in combinations appropriate to disease stage and patient needs. Home rehabilitation is managed by teams of professionals who train patients at home. METHODS: The scientific literature was systematically searched for controlled studies comparing outcomes and costs of home rehabilitation with the more conventional strategies. RESULTS: The abstracts of 204 papers were evaluated, from which 89 were selected for greater scrutiny. From the 89 studies, we found 7 controlled studies involving 1,487 patients (6 of the 7 were randomized, 4 of the 6 assessed costs). No statistically significant differences, or tendencies toward differences, were revealed as regards the outcome of home rehabilitation versus hospital-based alternatives. Thus, home rehabilitation was neither better nor worse at improving patients' ability to manage on their own or resume social activities. Depression and reduced quality of life were common in all groups of patients and caregivers, irrespective of the rehabilitation strategy. In the four randomized studies that reported on costs, home rehabilitation was found to be less expensive than regular day care, but not less expensive than conventional strategies even though hospital stay was reduced. CONCLUSION: The outcomes and costs of home rehabilitation after stroke seem to be comparable to alternative treatment strategies.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13752 (URN)
    Available from: 2002-12-19 Created: 2002-12-19
    3. Health care and social welfare costs in home-based and hospital-based rehabilitation after stroke
    Open this publication in new window or tab >>Health care and social welfare costs in home-based and hospital-based rehabilitation after stroke
    2002 (English)In: Vol. 16, no 4, p. 386-392Article in journal (Refereed) Published
    Abstract [en]

    During the 1990s most western European and Organization of Economic Cooperation and Development (OECD) countries experienced financial difficulties and were forced to cut back on or restrain health care expenditures. Home rehabilitation has received attention in recent years because of its potential for cost containment. Often forgotten, however, is the redistribution of costs from one caregiver to another. The aim of this study was to analyse whether a redistribution of costs occurs between health care providers (the County councils) and social welfare providers (the municipalities) in a comparison of home-based rehabilitation and hospital-based rehabilitation after stroke. The study population included 123 patients, 53 in the home-based rehabilitation group and 68 in the hospital-based rehabilitation group. The patients were followed up at 6 and 12 months after onset of stroke. Resource use over a 12-month period included acute hospital care, in-hospital rehabilitation, home rehabilitation and use of home-help service as well as nursing home living. The hospital-based rehabilitation group had significantly fewer hospitalization days after a decision was made about rehabilitation at the acute care ward and consequently the cost for the acute care period was significantly lower. The cost for the rehabilitation period was significantly lower in the home-based rehabilitation group. However, the cost for home help service was significantly higher in the home-based rehabilitation group. The total costs for the care episode did not differ between the two groups. The main finding of this study is that there seems to occur a redistribution of costs between health care providers and social welfare providers in home rehabilitation after stroke in a group of patients with mixed degree of impairment.

    Keywords
    home-based rehabilitation, hospital-based rehabilitation, redistribution of cost, stroke, cost
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13753 (URN)10.1046/j.1471-6712.2002.00115.x (DOI)
    Available from: 2002-12-19 Created: 2002-12-19 Last updated: 2018-05-23
    4. The economic burden of informal care
    Open this publication in new window or tab >>The economic burden of informal care
    2002 (English)In: International Journal of Technology Assessment in Health Care, ISSN 0266-4623, Vol. 18, no 1, p. 46-54Article in journal (Refereed) Published
    Abstract [en]

    OBJECTIVES: The great interest focused on home care technologies during the last decade resulted from its potential to cut costs. However, the reallocation of costs between healthcare providers and social welfare providers, and the indirect costs of informal care, are not as frequent topics of discussion. The aim of this paper is to discuss different models for estimating the costs of informal care in the home care setting in economic appraisals. METHODS: The outcome of using different models for estimating indirect costs was illustrated using empirical data regarding the time spent by informal caregivers in providing care in a group of home care patients (n = 59). The models used comprise different interpretations of the traditional human capital approach and the friction cost model. RESULTS AND CONCLUSIONS: Informal care is an important component in home care. The inclusion of indirect costs of informal care in economic appraisals will have implications for the cost-effectiveness of home care, since it will raise costs depending on the model used for estimating indirect costs. In this study we have shown that indirect costs estimated by the friction cost model only amount to 18% to 44% of the cost when the human capital approach is used. The results indicate that, regardless of the method used to estimate indirect costs, the cost of informal care in evaluations of home care programs is often underestimated due to the exclusion of indirect costs.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13754 (URN)
    Available from: 2002-12-19 Created: 2002-12-19
    5. Costs of informal care for patients in advanced home care: a population based study
    Open this publication in new window or tab >>Costs of informal care for patients in advanced home care: a population based study
    2003 (English)In: International Journal of Technology Assessment in Health Care, ISSN 0266-4623, E-ISSN 1471-6348, Vol. 19, no 4, p. 656-663Article in journal (Refereed) Published
    Abstract [en]

    Objectives: Several studies have sought to analyze the cost-effectiveness of advanced home care andhome rehabilitation. However, the costs of informal care are rarely included in economic appraisals ofhome care. This study estimates the cost of informal care for patients treated in advanced home careand analyses some patient characteristics that influence informal care costs.Methods: During one week in October 1995, data were collected on all 451 patients in advanced homecare in the Swedish county of O¨ stergo¨ tland. Costs were calculated by using two models: one includingleisure time, and one excluding leisure time. Multiple regression analysis was used to analyze factorsassociated with costs of informal care.Results: Seventy percent of the patients in the study had informal care around the clock during theweek investigated. The patients had, on average, five formal care visits per week, each of which lastedfor almost half an hour. Thus, the cost of informal care constituted a considerable part of the costof advanced home care. When the cost of leisure time was included, the cost of informal care wasestimated at SEK 5,880 per week per patient, or twice as high as total formal caregiver costs. Whenleisure time was excluded, the cost of informal care was estimated at SEK 3,410 per week per patient,which is still 1.2 times higher than formal caregiver costs (estimated at SEK 2,810 per week per patient).Informal care costs were higher among patients who were men, who were younger, who had their ownhousing, and who were diagnosed with cancer.Conclusions: Studies of advanced home care that exclude the cost of informal care substantiallyunderestimate the costs to society, regardless of whether or not the leisure time of the caregiver isincluded in the calculations.

    Keywords
    Informal care, Advanced home care, Home rehabilitation, Cost
    National Category
    Public Administration Studies Health Care Service and Management, Health Policy and Services and Health Economy
    Identifiers
    urn:nbn:se:liu:diva-13755 (URN)10.1017/S0266462303000618 (DOI)
    Available from: 2002-12-19 Created: 2002-12-19 Last updated: 2017-12-13Bibliographically approved
  • 3.
    Antelius, Eleonor
    Linköping University, Department of Medicine and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
    Different Voices - Different Stories: Communication, identity and meaning among people with acquired brain damage2009Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The main purpose of the dissertation is to understand meaning-making practices used by people suffering from acquired brain damage with severe physical and communicative disabilities, in order to create and sustain their identity and personhood in relation to other people. The study emanates from the idea that identity and personhood, also in relation to disability, are created/sustained in ongoing interaction between people in everyday situations, and that the ability to narrate is central to such a creation of identity. Therefore, it is of particular interest to try to understand what communicative and storytelling abilities/possibilities people with severe acquired brain damage have in presenting their identity.

    The study is ethnographic and based upon a year-long field study of participant observations at a day centre for people with acquired brain damage. Gathered data consist of written field notes, informal interviews conducted with both participants and personnel and approximately 70 hours of video data.

    The study shows how an identity as ‘severely disabled’ is created in the co-created storytelling between participants and personnel and that this identity seems to mean that one is dependent upon others to get along in everyday life at least if one listens only to spoken stories. Yet the study also shows that there exist different opinions about what this identity as ‘severely disabled’ could mean that there is a wish among the participants to be able to present a desirable identity as “normal”, and that such an identity comes to mean to be independent and self-determined. Normality, however, must be understood in relation to surrounding society (and the grand cultural narratives that surround us). Thus the study shows that normality in relation to severe disabilities is almost impossible to achieve because normality in relation to illness/disease/body contains the hope of a cure or an improvement. The participants in this study, however, have all been labelled as incurable – there is no hope of such a cure or improvement. That, on the other hand, does not mean that the participants do not try to tell such stories anyway in their quest to achieve this desirable identity. However, in order to hear this story we need to listen to stories that usually remain untold. A palpable hierarchy between different modes of language use was identified, where verbal/spoken language is supreme, resulting in the disabled participants not being perceived as competent interactors/communicators due to their difficulties in using verbal communication. Hence their ways of creating/telling stories, through embodiment and enactment, are not recognised as valid ways to create/tell stories; this is discussed in relation to both practical implications for health care settings as well as for further narrative research.

    List of papers
    1. Would you like to use one of these or would you rather be able to talk?: facilitated and/or augmentative communication and the preference for speaking
    Open this publication in new window or tab >>Would you like to use one of these or would you rather be able to talk?: facilitated and/or augmentative communication and the preference for speaking
    2009 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 11, no 4, p. 257-274Article in journal (Refereed) Published
    Abstract [en]

    This article examines the concepts of identity and personhood in relation to people with severe communicative disabilities. Data gathered at a Swedish day centre for people with acquired brain damage show that three main strategies in communication between able-speaking and impaired-speaking persons can be found; (1) perfunctory, (2) jigsaw puzzle, and (3) conjectural, all three strategies being based on the act of speaking. This article shows why it seems important to talk with one’s own physical voice instead of using augmentative and/or facilitated communication, even when one has a highly impaired speech pattern. I argue that an ideology of spoken language exists within western culture and that such an ideology has practical implications for the (re-)creation of meaning-making strategies in relation to people with severe communicative disorders. Implications for health-care personnel working with communicatively impaired people are also identified, as well as implications for researchers studying this field of interest.

    Place, publisher, year, edition, pages
    Taylor & Francis, 2009
    Keywords
    Communicative strategies; disability; ideology of speech; personhood; identify.
    National Category
    Social Work
    Identifiers
    urn:nbn:se:liu:diva-18318 (URN)10.1080/15017410902909100 (DOI)
    Available from: 2009-05-18 Created: 2009-05-18 Last updated: 2017-12-13Bibliographically approved
    2. Whose body is it anyway? Verbalization, embodiment, and the creation of narratives
    Open this publication in new window or tab >>Whose body is it anyway? Verbalization, embodiment, and the creation of narratives
    2009 (English)In: Health, ISSN 1363-4593, E-ISSN 1461-7196, Vol. 13, no 3, p. 361-379Article in journal (Refereed) Published
    Abstract [en]

    This article examines the creation of narratives between people with severe disabilities and the personnel working with them. It shows that although a co-created narrative of what it means to be severely disabled (the story of dependence) seems to prevail, another narrative (the story of autonomy) is also told, where the story of dependence is rejected by the person with disabilities. However, this story of autonomy only becomes clear if we recognize three central claims: (1) there is a connection between where the physical body of the person with disabilities is positioned in space and what he or she is allowed or able to be and do; (2) since the body is a communicative tool, the moving of the body could be interpreted as a narrative, told through the embodiment of space; and (3) the embodied story can challenge existing social structures. The article highlights the inherent struggle for power within narrations and how the creation of alternative narratives can contest existing social structures.

    Keywords
    Disability, embodiment, narratives, power relations
    National Category
    Social Work
    Identifiers
    urn:nbn:se:liu:diva-18034 (URN)10.1177/1363459308101808 (DOI)
    Available from: 2009-05-04 Created: 2009-05-04 Last updated: 2017-12-13Bibliographically approved
    3. The Meaning of the Present: Hope and Foreclosure in Narrations about People with Severe Brain Damage
    Open this publication in new window or tab >>The Meaning of the Present: Hope and Foreclosure in Narrations about People with Severe Brain Damage
    2007 (English)In: Medical Anthropology Quarterly, ISSN 0745-5194, E-ISSN 1548-1387, Vol. 21, no 3, p. 324-342Article in journal (Refereed) Published
    Abstract [en]

    In this article, I consider narratives told within a clinical setting. I argue that personnel in a day center for people with acquired brain damage are constantly involved in narrating about the disabled participants. The negotiation of who the participant is, and foremost will be, is in constant negotiation in regard to issues of hope. I further argue that hope is a meaning-making process and, as such, it has been defined as crucially connected to time. Hope has been said to enable a connection between the present and the future, because action taken in the present could bring about (positive) change in the future. However, I show that hope, in relation to narratives told about people with severe disabilities that are considered "incurable," must be understood within a realm of narrative foreclosure. Time seems to have lost the openness of its horizon for these people, and a narrative that tells of immediacy rather than chronology is created, resulting in hope being established within the present.

    Place, publisher, year, edition, pages
    Wiley InterScience, 2007
    Keywords
    Disability, hope, motivation, narrative foreclosure, time
    National Category
    Social Work
    Identifiers
    urn:nbn:se:liu:diva-18319 (URN)10.1525/MAQ.2007.21.3.324 (DOI)
    Available from: 2009-05-18 Created: 2009-05-18 Last updated: 2017-12-13Bibliographically approved
    4. Communicative disability and stories: Towards an embodied conception of narratives
    Open this publication in new window or tab >>Communicative disability and stories: Towards an embodied conception of narratives
    2011 (English)In: Health, ISSN 1363-4593, E-ISSN 1461-7196, Vol. 15, no 6, p. 588-603Article in journal (Refereed) Published
    Abstract [en]

    In this article we show that persons with communicative disabilities are often involved in storytelling that does not necessarily conform to the conventional expectations of what constitutes a narrative. By analyzing the relationship between story and storytelling event, and the relation between what could be called the primary storyteller and the vicarious storyteller, we show that storytellers with communicative disabilities are often quite inventive in finding ways of presenting themselves as competent storytellers even though they may have certain problems vocally animating a coherent, structured story. This lead us to conclude a necessary redefinition of what a narrative is – that it could be performed as well as it could be told – and that such a redefinition stresses methodological issues: in order to be able to study the life stories of people with communicative disabilities we need to use both narrative and ethnographic research methods.

    Place, publisher, year, edition, pages
    Sage, 2011
    Keywords
    communicative disability, narratives, story, storytelling, voice
    National Category
    Social Work
    Identifiers
    urn:nbn:se:liu:diva-18322 (URN)10.1177/1363459310364158 (DOI)000296746300003 ()
    Available from: 2009-05-18 Created: 2009-05-18 Last updated: 2017-12-13Bibliographically approved
  • 4.
    Berzell, Martin
    Linköping University, Department of Medicine and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
    Electronic Healthcare Ontologies: Philosophy, the real world and IT structures2010Doctoral thesis, monograph (Other academic)
    Abstract [en]

    The thesis investigates how the notion of ‘ontology’ has been used in the field of medical informatics and knowledge representation. Partly to investigate what an ‘ontology’ can be said to represent and what requirements we can have on a good ‘ontology’. The author studies the already existing medical terminologies and ‘ontologies’ to elucidate what theories they are based on. The terminological theories of Eugen Wüster and his legacy in medical informatics are studied. It is noted that terminological theories handling linguistic entities are not suited for describing and representing medical theories, since these are assumed to refer to the real world, which consists of more than linguistics entities.

    In order to find a metaphysical theory in accordance with the world view that medical theories describe, the author turn to the critical realism of Karl Popper, Roy Bhaskar and Ilkka Niiniluoto. These theories, taken together with the metaphysical theories regarding universals of David M Armstrong and Ingvar Johansson, are used as a basis to find out what an ‘ontology’ can be said to represent, and what criteria and requirements we can have on a good ‘ontology’. Among the requirements presented in the thesis are stability, interoperability and the requirement that a good ‘ontology’ must be in accordance with our best available theories.

    Finally, it is discussed how these requirements and criteria can come into conflict with one another, and how one should reason when handling these trade-offs. The author emphasises the importance of including the medical expertise in the process of creating ‘ontologies’, in order to produce as useful and relevant ‘ontologies’ as possible.

  • 5.
    Boman, John
    Linköping University, Department of Behavioural Sciences and Learning, Sociology.
    Viljans vägar och villovägar: Den politiska diskussionen om klasskillnader i hälsa under 1980- och 90-talet2002Doctoral thesis, monograph (Other academic)
    Abstract [en]

    On Devious Paths: The political intention to reduce social inequalities in health in the late 20th century. The ambition of this thesis is to try to detect what happened in the Swedish society when the ideal of equality more and more lost its potential of reality during the 1980s and 1990s. The object in focus is, from this understanding of the contemporary society, to analyse how the Swedish State handled social inequalities in health during this period. This political activity is mainly analysed from Zygmunt Bauman's, Pierre Bourdieu's and Michel Foucault's theories and concepts. Theoretically, the activity can be summarised in three phases:  Initially, there was the unreliability on the field that disturbed the political discussion. When a relative reliability was created the field transformed into an apparatus in Pierre Bourdieu's sense. Finally, as a consequence of the apparatisation, the inequalities in health become a non-problem. The thesis is concluded by thoughts about whether there is a fourth phase, when not even the apparatus is able to mediate the complexity of the problems of the area, when the non-problem no longer works as a state legitimation act, when homo valens (the capable human being) instead of homo saluber (the healthy human being) becomes the supreme ideal in society.

  • 6.
    Bülow, Per
    Linköping University, Department of Department of Health and Society, Tema Health and Society. Linköping University, Faculty of Arts and Sciences.
    Efter mentalsjukhuset: en studie i spåren av avinstitutionaliseringen av den psykiatriska vården2004Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The focus of this thesis is the reorganisation of psychiatric care, the deinstitutionalisation process, which has been carried through in Sweden and other countries in the western world. Psychiatric care has been both specialised and decentralised and new actors, outside the medical service, have been involved in care, support and service to people with severe mental illnesses. The deinstitutionalisation process has been followed by a constant debate about its merits and shortcomings. The critics assert that people with severe mental illnesses have been abandoned by an indifferent society, which has resulted in negative consequences like premature death, homelessness and criminalisation. The proponents of the process, on the other hand, state that people who previously lived their lives in mental hospitals and in the margin of the society now have regained their citizenship and can participate in community life.

    The overall aim of the thesis was to study and illuminate changes in care, support and service in the wake of the deinstitutionalisation process in Sweden. The study is a retrospective, longitudinal cohort study that extended over a period of 15 years, from 1984 to 1998. It takes its starting-point in one of the about thirty mental hospitals in Sweden at that time. Data were collected from "the Cause of death" Register at Statistics Sweden (SCB), the Swedish Police Register, the Social Insurance Office, from medical records, and via inquiry form from contact persons and staff close to the patients. Through the collected data changes in variables such as criminality, mortality, homelessness, treatment in inpatient and outpatient settings, daily activities, living conditions and other social conditions were followed over the lS-year period covering all 138 patients included in the study.

    The amount of days in hospitals decreased while attendance at outpatient clinics increased. There was a considerable increase in social service delivery in the form of housing and occupational support. However, many patients lacked social contacts outside their regularly visits at outpatient clinics. There were no increases in premature death or suicide and the criminality showed a decline between 1992-1998. The results of the study suggest that there are some reasons to adopt a positive attitude toward the deinstitutionalisation process in Sweden.

  • 7.
    Ekman, Aimée
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Ett fett liv: En artikulering av viktordningen på bas av överviktiga människors erfarenheter2012Doctoral thesis, monograph (Other academic)
    Abstract [en]

    The purpose of this thesis is to develop a conceptual and theorizing understanding of circumstances and possibilities in fat people’s lives. Starting in interviews with fifteen fat Swedes, this research finally ended up as an articulation of processes and sub-processes within the weight order. The weight order is a system that orders all of us horizontally as underweight, normal weight or overweight. It also orders us vertically as super- or subordered depending on which weight category we belong to. This means that some are favoured while others are unfairly treated. The fact that fat people in Western cultures tend to be sub-ordered, oppressed and unfairly treated because of their body sizes and weights has already been shown in previous research, and this study does not treat that issue to any great extent. Instead it focuses on the ordering system that is evident in fat people’s statements and in previous research about fatness and overweight within the humanities and social sciences. By theorizing around weight order I wish to broaden the understanding of how subordination, oppression and unfair treatment of fat people are possible. The weight order is not a system for subordination of fat people. Those who dominate are also in some sense dominated. Subordination is rather an effect driven by the weight-ordered system.

    The weight order is a more inclusive conception than has been presented in this study. The theoretical treaties examine four processes, sub-processes and elements within the weight order. These include weight-ordering conditions, weightification, subsuming weightdoing, and downplaying weightification. Weight-ordering conditions deal with cultural and social circumstances that make the weight order possible. These conditions are processes that no one can fully escape. In the other processes it is only fat people’s positions and roles within the weight order that is in focus. Weightification consists of the processes that make body weight important in people’s lives. In this work weightification highlights different forms that make fat people experience and understand their overweight as negatively important in their lives. Subsuming weight-doings deals with social and cultural means that are intended to make fat people thin (-er). These also tend to make the  body weight negative for fat people. The three first processes treat the first part of the aim, fat people’s conditions. The second part of the aim, possibilities, is dealt with in the fourth and last process, downplaying weightification. Downplaying weightification can simply be described as including the opposite forces to weightification, and deals with how fat people can make their overweight less important.

  • 8.
    Guntram, Lisa
    Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Ambivalent Ambiguity?: A study of how women with 'atypical' sex development make sense of female embodiment2014Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Against a backdrop of feminist and social scientific research on sex, female embodiment, and normality this thesis aims to discern how young women, who in adolescence have learned that their bodies are developing in ways considered ‘atypical’ for the female sex, make sense of their bodies and their situation. In focus are the ways in which the women make sense of and negotiate female embodiment; how they, particularly in stories about their interactions with others, position their embodied selves; and how norms and beliefs about sexed embodiment, heterosexual practice, and in/fertility are strengthened and challenged in the interviewees’ sense-making. The data comprise 23 in-depth interviews with women who in adolescence have learned that they do not have a uterus and a vagina, or who have learned that they do not have two X chromosomes and have no, or non-functioning, ovaries. Through narrative and thematic analysis the thesis shows how the women’s sense-making can be obstructed by norms about female embodiment, heterosexual practice, and in/fertility, expressed through medical terminology and practice and in interaction with family, friends, and peers, as described by the interviewees. Concomitantly, as the thesis demonstrates, medical terminology can be experienced and function as a resource in the women’s sense-making. Diagnostic categories enable them to put the specificities of sex development into words and raise awareness about bodily variation. Furthermore, in their stories about others’ reactions to their bodies and about their experience and management of certain medical treatments, the women question norms about female embodiment, heterosexual practice, and in/fertility that were previously taken for granted. The complexity of the women’s sense-making is demonstrated through the ways in which the interviewees, on the one hand, align with norms about female embodiment, heterosexual practice, and in/fertility, and in which they, on the other hand, succeed in challenging the same. In this ‘juggling’ of reinforcement and resistance, the thesis argues, the women are found to expand rather than dismiss beliefs about female embodiment.  Thus, the thesis contributes with deepened knowledge about what it can be like to live with these specific conditions and with problematizations of how norms about female embodiment can be enacted and questioned.

    List of papers
    1. Creating, maintaining and questioning (hetero)relational normality in narratives about vaginal reconstruction
    Open this publication in new window or tab >>Creating, maintaining and questioning (hetero)relational normality in narratives about vaginal reconstruction
    2013 (English)In: Feminist Theory, ISSN 1464-7001, E-ISSN 1741-2773, Vol. 14, no 1, p. 105-121Article in journal (Refereed) Published
    Abstract [en]

    Analysing ten interviews with women diagnosed with and treated for congenital absence of the vagina, this article theorises the notion of ideal (hetero) relational normality. It explores how women in my case study negotiate, relate to and challenge this notion and examines the normative and bodily work for which it calls. The article specifically underscores the corporeal dimension of (hetero) relational normality. I argue that this notion of normality shapes the bodies of the women through medical interventions, while concurrently being reinforced through the corporeal shapings that the women undergo. These corporeal shapings consolidate enacted norms concerning heterosexuality and form understandings of female and male bodies. The analysis also reveals how these women nevertheless find ways to re-negotiate and question the notion of ideal (hetero) relational normality and its intertwinement with medical practice. The article contributes both to the critical examination of genital surgery and to feminist discussions of how to critically examine heterosexuality without rejecting it. Furthermore, it provides a deeper understanding of how medical interventions designed to create a vagina, or dilate a vagina considered too small, are made meaningful by the women affected.

    Place, publisher, year, edition, pages
    SAGE Publications (UK and US), 2013
    Keywords
    Disordered sex development; heterosexuality; narrative; normality; vaginal agenesis; vaginal reconstruction; young women
    National Category
    Social Sciences
    Identifiers
    urn:nbn:se:liu:diva-104853 (URN)10.1177/1464700112468573 (DOI)000330303900007 ()
    Available from: 2014-02-28 Created: 2014-02-28 Last updated: 2017-12-05
    2. ‘You have all those emotions inside that you cannot show because of what they will cause’: Disclosing the absence of one’s uterus and vagina
    Open this publication in new window or tab >>‘You have all those emotions inside that you cannot show because of what they will cause’: Disclosing the absence of one’s uterus and vagina
    2016 (English)In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 167, p. 63-70Article in journal (Refereed) Published
    Abstract [en]

    This article examines young women's experiences of telling others that they have no uterus and no, or a so-called small, vagina – a condition labelled ‘congenital absence of uterus and vagina’, which falls within the larger category of ‘atypical’ sex development. Our aim is to investigate how affective dissonances such as fear and frustration are expressed in young women's narratives about letting others know about their ‘atypical’ sex development, and how these women narrate desired steps to recognition. By drawing on feminist writings on the performativity of affects or emotions, we examine what affective dissonances accomplish within three identified narratives: how affective dissonances may contribute to the women's positioning of themselves vis-à-vis other individuals and how affective dissonances can imply a strengthening and/or questioning of norms about female embodiment and heterosexuality. This allows us to tease out how routes for questioning of these norms become available through the three narratives that together form a storyline of coming out about a congenital absence of a uterus and vagina in the Swedish context. Furthermore, by demonstrating how others' responses shape the women – their understandings of their own bodies, their envisaged future disclosures and their relations – our analysis highlights the multifaceted intersubjective and in other ways relational, affective and temporal dimensions of coming out about one's 'atypical' sex development.

    Place, publisher, year, edition, pages
    Elsevier, 2016
    Keywords
    Emotions, intersex, Disorder of sex development (DSD), vagina, uterus, coming out, Sweden, Affective dissonance
    National Category
    Social Sciences Interdisciplinary Gender Studies
    Identifiers
    urn:nbn:se:liu:diva-111097 (URN)10.1016/j.socscimed.2016.08.028 (DOI)000384871300008 ()27598551 (PubMedID)
    Note

    At the time for thesis presentation publication was in status: Manuscript

    Funding agencies: Pro Futura Scientia Fellowship; Swedish Collegium for Advanced Study; Uppsala University; Riksbankens Jubileumsfond; Department of Thematic Studies, Linkoping University

    Available from: 2014-10-07 Created: 2014-10-07 Last updated: 2018-01-11Bibliographically approved
    3. "Differently normal" and "normally different": Negotiations of female embodiment in women's accounts of 'atypical sex' development
    Open this publication in new window or tab >>"Differently normal" and "normally different": Negotiations of female embodiment in women's accounts of 'atypical sex' development
    2013 (English)In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 98, p. 232-238Article in journal (Refereed) Published
    Abstract [en]

    During recent decades numerous feminist scholars have scrutinized the two-sex model and questioned its status in Western societies and medicine. Along the same line, increased attention has been paid to individuals experiences of atypical sex development, also known as intersex or disorders of sex development (DSD). Yet research on individuals experiences of finding out about their atypical sex development in adolescence has been scarce. Against this backdrop, the present article analyses 23 in-depth interviews with women who in their teens found out about their atypical sex development. The interviews were conducted during 2009-2012 and the interviewees were all Swedish. Drawing on feminist research on female embodiment and social scientific studies on diagnosis, I examine how the women make sense of their bodies and situations. First, I aim to explore how the women construe normality as they negotiate female embodiment. Second, I aim to investigate how the divergent manners in which these negotiations are expressed can be further understood via the womens different access to a diagnosis. Through a thematic and interpretative analysis, I outline two negotiation strategies: the "differently normal" and the "normally different" strategy. In the former, the women present themselves as just slightly different from normal women. In the latter, they stress that everyone is different in some manner and thereby claim normalcy. The analysis shows that access to diagnosis corresponds to the ways in which the women present themselves as "differently normal" and "normally different", thus shedding light on the complex role of diagnosis in their negotiations of female embodiment. It also reveals that the women make use of what they do have and how alignments with and work on norms interplay as normality is construed.

    Place, publisher, year, edition, pages
    Elsevier, 2013
    Keywords
    Sweden; Normality; Negotiation; Diagnosis; Female embodiment; Atypical sex development; Qualitative analysis; Young women
    National Category
    Social Sciences
    Identifiers
    urn:nbn:se:liu:diva-104132 (URN)10.1016/j.socscimed.2013.09.018 (DOI)000329273600029 ()
    Available from: 2014-02-07 Created: 2014-02-07 Last updated: 2017-12-06
    4. Hooked on a feeling?: Corporeal connectedness and relationality in infertility accounts
    Open this publication in new window or tab >>Hooked on a feeling?: Corporeal connectedness and relationality in infertility accounts
    2018 (English)In: Health, ISSN 1363-4593, E-ISSN 1461-7196, Vol. 22, no 3, p. 259-276Article in journal (Refereed) Published
    Abstract [en]

    Sociocultural meanings accorded to infertility, and rapid developments in assisted reproductive technologies, have long been central concerns in feminist and social scientific research. However, knowledge is scarce concerning how individuals make sense of infertility when it is disclosed in adolescence, for example as the result of an ‘atypical’ sex development, rather than as a result of failed conception. This article examines how understandings of desires, kinship and ‘solutions’ take shape and are negotiated in the accounts women give of infertility resulting from ‘atypical’ sex development. Through a thematic analysis it demonstrates how the interviewees described their desire for relationships and connectedness, which they considered to be made possible through pregnant embodiment, and details how these desires connected to a preference for medical ‘solutions’. Specifically, the article discusses how the interviewees’ accounts exemplifies how biological kinship can be ‘done’ without giving precedence to genetics. By addressing the specificities of finding out about infertility as a result of ‘atypical’ sex development, it furthermore highlights gaps in the common medical definition of infertility. These findings underscore the urgency of examining how definitions of infertility obscure certain experiences and consequently limit affected individuals’ access to support and treatment. In conclusion, it is suggested that the article contributes to a more positive discourse on infertility in feminist scholarship by teasing out the temporal dimensions of how affected individuals ‘make active use’ of assisted reproductive technologies to mitigate uncertainty and maintain hope, while at the same time renegotiating dominant norms of kinship.

    Place, publisher, year, edition, pages
    Sage Publications, 2018
    Keywords
    chronic illness and disability, experiencing illness and narratives, gender and health
    National Category
    Social Sciences Interdisciplinary Gender Studies
    Identifiers
    urn:nbn:se:liu:diva-111099 (URN)10.1177/1363459317693403 (DOI)000429809800004 ()28401811 (PubMedID)
    Available from: 2014-10-07 Created: 2014-10-07 Last updated: 2018-04-26Bibliographically approved
  • 9.
    Gustavsson, Erik
    Linköping University, Department of Culture and Communication, Culture and Aesthetics. Linköping University, Faculty of Arts and Sciences.
    Characterising Needs in Health Care Priority Setting2017Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The focus of this thesis is needs in the context of health care priority setting. The notion of needs has a strong standing in health care policy; however, how the idea should be understood more specifically and how it should guide decisions about priority setting remain contentious issues. The aim of this thesis is to explore how needs should be characterised in health care priority setting. This matter is approached by, first, exploring and developing the conceptual structure of health care needs, and second, discussing and suggesting solutions to normative questions that arise when needs are characterised as a distributive principle.

    In the first article, the conceptual structure of needs in general and health care needs in particular is explored, and it is argued that a specific characterisation of health care needs is required.

    In the second article, the notion of health care needs is explored in relation to preferences for health care within the context of shared decision-making. The paper further discusses a number of queries that arise in the intersection between what the patient needs and what the patient wants.

    The third article discusses how a principle of need should handle questions about interpersonal aggregation. The paper characterises a principle of need which strikes a reasonable balance between giving priority to the worst off and the distribution of benefits with regard to interpersonal aggregation.

    The fourth article discusses how a principle of need should account for the fact that patients often are badly off due to several conditions rather than one single condition. It is argued that how badly off patients are should be understood as a function of how badly off these patients are when all of their conditions (for which they need health care) are considered.

    The frame story provides the terminological, theoretical, contextual, and methodological background for the discussion undertaken in this thesis. The conclusions of the articles are brought together and the discussion extended in the concluding discussion by sketching a number of conditions of adequacy for the concept and principle of need relevant for health care priority setting.  

    List of papers
    1. From Needs to Health Care Needs
    Open this publication in new window or tab >>From Needs to Health Care Needs
    2014 (English)In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 22, no 1, p. 22-35Article in journal (Refereed) Published
    Abstract [en]

    One generally considered plausible way to allocate resources in health care is according to people’s needs. In this paper I focus on a somewhat overlooked issue, that is the conceptual structure of health care needs. It is argued that what conceptual understanding of needs one has is decisive in the assessment of what qualifies as a health care need and what does not. The aim for this paper is a clarification of the concept of health care need with a starting point in the general philosophical discussion about needs. I outline three approaches to the concept of need and argue that they all share the same conceptual underpinnings. The concept of need is then analyzed in terms of a subject x needing some object y in order to achieve some goal z. I then discuss the relevant features of the object y and the goal z which make a given need qualify as a health care need and not just a need for anything.

    Place, publisher, year, edition, pages
    Springer, 2014
    Keywords
    Harm; Health; Health care; Health care need; Need; Priority-setting; Rationing; Well-being
    National Category
    Philosophy, Ethics and Religion Other Medical Sciences
    Identifiers
    urn:nbn:se:liu:diva-106476 (URN)10.1007/s10728-013-0241-8 (DOI)000331640900003 ()
    Available from: 2014-05-08 Created: 2014-05-08 Last updated: 2018-01-10Bibliographically approved
    2. Health-care needs and shared decision-making in priority-setting
    Open this publication in new window or tab >>Health-care needs and shared decision-making in priority-setting
    2015 (English)In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 18, no 1, p. 13-22Article in journal (Refereed) Published
    Abstract [en]

    In this paper we explore the relation between health-care needs and patients desires within shared decision-making (SDM) in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and discuss a number of queries which seem to arise due to the double focus on a patients need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine.

    Place, publisher, year, edition, pages
    Springer Verlag (Germany), 2015
    Keywords
    Needs; Health-care needs; Shared decision-making; Desires; Priority setting; Rationing
    National Category
    Clinical Medicine
    Identifiers
    urn:nbn:se:liu:diva-114234 (URN)10.1007/s11019-014-9568-7 (DOI)000347699000003 ()24807745 (PubMedID)
    Available from: 2015-02-16 Created: 2015-02-16 Last updated: 2019-06-27Bibliographically approved
    3. Principles of Need and the Aggregation Thesis
    Open this publication in new window or tab >>Principles of Need and the Aggregation Thesis
    2019 (English)In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 27, no 2, p. 77-92Article in journal (Refereed) Published
    Abstract [en]

    Principles of need are constantly referred to in health care priority setting. The common denominator for any principle of need is that it will ascribe some kind of special normative weight to people being worse off. However, this common ground does not answer the question how a plausible principle of need should relate to the aggregation of benefits across individuals. Principles of need are sometimes stated as being incompatible with aggregation and sometimes characterized as accepting aggregation in much the same way as utilitarians do. In this paper we argue that if one wants to take principles of need seriously both of these positions have unreasonable implications. We then characterize and defend a principle of need consisting of sufficientarian elements as well as prioritarian which avoids these unreasonable implications.

    Place, publisher, year, edition, pages
    Springer, 2019
    Keywords
    Aggregation, Needs, Principles of need, Prioritarianism, Priority setting, Sufficiency
    National Category
    Ethics
    Identifiers
    urn:nbn:se:liu:diva-144208 (URN)10.1007/s10728-017-0346-6 (DOI)000466950700002 ()28866792 (PubMedID)2-s2.0-85028766963 (Scopus ID)
    Available from: 2018-01-10 Created: 2018-01-10 Last updated: 2019-06-23Bibliographically approved
  • 10.
    Jaarsma, Pier
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Reflections on Autism: Ethical Perspectives on Autism Spectrum Disorder in Health Care and Education2014Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    In the four papers presented in this dissertation I analyze and discuss various value statements and moral stances, which I regard as unjustifiably harmful for persons with Autism and obstacles for the creation of an Autism-friendly society. In the papers I try to show that the positions underpinning the Autism-phobic moral stances are not warranted and cannot be defended in a good way. In doing so, I hope to transform the harmful moral intuitions underlying these positions into autism-friendly ones. The first paper investigates the Neurodiversity claim that ‘Autism is a natural variation’. The claim is interpreted and investigated and an argument is given that, contrary to Low-Functioning Autism, High-Functioning Autism can indeed be seen as a natural variation, without necessarily being seen as a disability. The second paper focuses on the problem for persons with Autism to adapt to prosocial lying, which is saying something not true but socially acceptable in a situation. By comparing a Kantian approach and a care ethics approach, the paper ends up recommending teaching persons with Autism to lie in a rule based and empathic way. The third paper deals with the morality of embryo selection in IVF. Based on a widely shared intuition of natural capabilities, arguments are given that it is morally legitimate to choose an Autistic embryo instead of a ‘normal’ one, contrary to arguments given by proponents of ‘every child should have the best chance of the best life’. The fourth paper deals with moral education. An argument is given that due to problems with cognitive empathy children with Autism should be taught pro-social behavior in a rule based way.

    List of papers
    1. Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement
    Open this publication in new window or tab >>Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement
    2012 (English)In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 20, no 1, p. 20-30Article in journal (Refereed) Published
    Abstract [en]

    Neurodiversity has remained a controversial concept over the last decade. In its broadest sense the concept of neurodiversity regards atypical neurological development as a normal human difference. The neurodiversity claim contains at least two different aspects. The first aspect is that autism, among other neurological conditions, is first and foremost a natural variation. The other aspect is about conferring rights and in particular value to the neurodiversity condition, demanding recognition and acceptance. Autism can be seen as a natural variation on par with for example homosexuality. The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable. We will discuss the effects of DSM categorization and the medical model for high functioning autists. After a discussion of autism as a culture we will analyze various possible strategies for the neurodiversity movement to claim extra resources for autists as members of an underprivileged culture without being labelled disabled or as having a disorder. We will discuss their vulnerable status as a group and what obligation that confers on the majority of neurotypicals.

    Place, publisher, year, edition, pages
    Dordrecht: Springer, 2012
    Keywords
    Autism, Disability, DSM-V, Equality, Neurodiversity, Vulnerability
    National Category
    Ethics
    Identifiers
    urn:nbn:se:liu:diva-72172 (URN)10.1007/s10728-011-0169-9 (DOI)000300252300002 ()
    Available from: 2011-11-21 Created: 2011-11-21 Last updated: 2017-12-08
    2. Living the Categorical Imperative: autistic perspectives on lying and truth telling-between Kant and care ethics
    Open this publication in new window or tab >>Living the Categorical Imperative: autistic perspectives on lying and truth telling-between Kant and care ethics
    2012 (English)In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 15, no 3, p. 271-277Article in journal (Refereed) Published
    Abstract [en]

    Lying is a common phenomenon amongst human beings. It seems to play a role in making social interactions run more smoothly. Too much honesty can be regarded as impolite or downright rude. Remarkably, lying is not a common phenomenon amongst normally intelligent human beings who are on the autism spectrum. They appear to be 'attractively morally innocent' and seem to have an above average moral conscientious objection against deception. In this paper, the behavior of persons with autism with regard to deception and truthfulness will be discussed in the light of two different ethical theories, illustrated by fragments from autobiographies of persons with autism. A systemizing 'Kantian' and an empathizing 'ethics of care' perspective reveal insights on high-functioning autism, truthfulness and moral behavior. Both perspectives are problematic from the point of view of a moral agent with autism. High-functioning persons with autism are, generally speaking, strong systemizes and weak empathizers. Particularly, they lack 'cognitive empathy' which would allow them to understand the position of the other person. Instead, some tend to invent a set of rules that makes their behavior compatible with the expectations of others. From a Kantian point of view, the autistic tendency to always tell the truth appears praiseworthy and should not be changed, though it creates problems in the social life of persons with autism. From a care ethics perspective, on the other hand, a way should be found to allow the high-functioning persons with autism to respect the feelings and needs of other persons as sometimes overruling the duty of truthfulness. We suggest this may even entail 'morally educating' children and adolescents with autism to become socially skilled empathic 'liars'.

    Place, publisher, year, edition, pages
    Dordrecht: Springer, 2012
    Keywords
    High-functioning autism, Autobiographies, Truthfulness, Moral responsibilities, Moral education, Kant, Ethics of care
    National Category
    Ethics
    Identifiers
    urn:nbn:se:liu:diva-72173 (URN)10.1007/s11019-011-9363-7 (DOI)
    Available from: 2011-11-21 Created: 2011-11-21 Last updated: 2017-12-08Bibliographically approved
    3. Human capabilities, mild autism, deafness and the morality of embryo selection
    Open this publication in new window or tab >>Human capabilities, mild autism, deafness and the morality of embryo selection
    2013 (English)In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 16, no 4, p. 817-824Article in journal (Refereed) Published
    Abstract [en]

    A preimplantation genetic test to discriminate between severe and mild autism spectrum disorder might be developed in the foreseeable future. Recently, the philosophers Julian Savulescu and Guy Kahane claimed that there are strong reasons for prospective parents to make use of such a test to prevent the birth of children who are disposed to autism or Asperger’s disorder. In this paper we will criticize this claim. We will discuss the morality of selection for mild autism in embryo selection in a hypothetical in vitro fertilization (IVF) situation where preimplantation genetic diagnosis is performed and compare this with a similar selection for congenital deafness. To do this we first discuss relevant human differences. We then introduce the principle of human capabilities (PC) and compare this principle with the principle of procreative beneficence (PB) introduced by Savulescu and Kahane. We apply the two principles to selection for mild autism and selection for congenital deafness. We argue that PC allows for the selection for mild autism but rules out selection for congenital deafness. PB will not give clear answers; the ruling of PB depends to a large extent on expected social, cultural and political developments. We will argue that PC is preferable to PB. We will discuss arguments for the value of mild autism for individuals who have this condition and argue that they are able to lead a life with human dignity provided autism-friendly social circumstances are present. Neither PC nor PB yields strong reasons for prospective parents to seek to prevent the birth of children who are disposed to mild autism spectrum disorder.

    Place, publisher, year, edition, pages
    Springer Netherlands, 2013
    Keywords
    autism, reproduction, genetic selection, ethics, human capabilities, procreative beneficence, quality of life
    National Category
    Ethics
    Identifiers
    urn:nbn:se:liu:diva-89704 (URN)10.1007/s11019-013-9464-6 (DOI)000327128500021 ()
    Available from: 2013-03-04 Created: 2013-03-04 Last updated: 2017-12-06
    4. Cultivation of empathy in individuals with high-functioning autism spectrum disorder
    Open this publication in new window or tab >>Cultivation of empathy in individuals with high-functioning autism spectrum disorder
    2013 (English)In: Ethics and Education, ISSN 1744-9642, E-ISSN 1744-9650, Vol. 8, no 3, p. 290-300Article in journal (Refereed) Published
    Abstract [en]

    High-functioning individuals with autism spectrum disorder (HF-ASD) typically lack cognitive empathy, compromising their moral agency from both a Kantian and a Humean perspective. Nevertheless, they are capable of exhibiting moral behavior, and sometimes, they exhibit what may be deemed ‘super-moral’ behavior. The empathy deficit poses, to varying degrees, limitations with respect to their moral motivation and moral agency. To compensate for this deficit, individuals with HF-ASD rely primarily, and justifiably, on the formation and application of moral rules. Educators who focus predominantly on empathy, however, may be less effective in the moral education of individuals with HF-ASD because they neglect the preference for rules of the latter. In this article, I argue that an individualized balance of empathy-based and rule-based strategies in the context of moral education is needed to assist individuals with HF-ASD in their challenges with moral motivation and moral agency.

    Place, publisher, year, edition, pages
    Taylor & Francis, 2013
    Keywords
    Autism spectrum disorder, empathy, rules, education, Kant, Hume
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-104417 (URN)10.1080/17449642.2013.878514 (DOI)
    Available from: 2014-02-17 Created: 2014-02-17 Last updated: 2017-12-06Bibliographically approved
  • 11.
    Jacobsson, Fredric
    Linköping University, Department of Department of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Den barmhärtige ekonomiten - Effektivitets och rättviseaspekter på altruism och hälsa2005Doctoral thesis, monograph (Other academic)
    Abstract [en]

    To what extent people only act on basis of their own interests is a question that has been subject to extensive discussion during many years. The economic standard model takes as its starting point that people are only interested in their own welfare. The aim of this dissertation is to analyse the term altruism from a multidisciplinary perspective. It is also to study whether people's health-oriented and pure altruism is related to needs and to study whether altruistic preferences are paternalistically health-oriented. The fmal aim is to study and discuss the motives, existence and characteristics of the altruistic preferences and their importance in health economic analyses.

    This dissertation takes a literary survey, mainly related to economics, philosophy, medicine and psychology as its starting point. The concepts of efficiency, health, fairness and altruism play a main part in the description of the theoretical background. Studies of altruism within the health care sector are scarce. Against this background, three empirical studies are carried out and presented. Two methods (dictator games and willingness to pay) have been modified and used.

    The empirical studies carried out and the surveys of the literature show altruism to exist both in connection with other people's health and more in general. The existence of altruism and the strength of the altruistic preferences are very dependent on the situation. In more serious health states, most people seem to be altruistic and then, they also want to renounce a relatively large part of their own resources. The results indicate that altruism is related to needs and is paternalistically health-oriented. These results also indicate that the economic standard model ought to be completed with altruistic preferences in order to create an efficient allocation of resources within health care. Altruistic preferences might also contribute to a resource allocation considered as more fair by the citizens of the society.

  • 12.
    Jansson, Marie
    Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Arts and Sciences.
    Två kön eller inget alls: politiska intentioner och vardagslivets realiteter i den arbetslivsinriktade rehabiliteringen2003Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    This dissertation poses questions concerning the shaping of the welfare state and the implications of citizenship. Citizenship in democratic welfare states is based on the idea that everyone is of equal value. Who it is that constitutes the norm for "everyone" is examined in this analysis by applying feminist theory as a complement to more traditional political theories.

    By following developments within an area of social insurance – vocational rehabilitation - from the 1940s until the year 2000, changes over the years in the norms and values of the welfare state become apparent, from a recognition of both gainful employment and household work to an almost total disavowal of unpaid work. This analysis shows that development of the welfare state can be very well explained by social liberal theory when citizenship based on a male norm constitutes the frame of reference. When feminist theory adds the private sphere, and the realities of everyday life are taken into consideration, citizenship is no longer equally accessible to both sexes.

    In the Swedish welfare model, gainful employment is encouraged, and by using various incentives the state tries to induce women to take part in gainful employment to the same extent as men. This has not succeeded, which according to feminist theory is because the policy focuses only on citizens in the public sphere. According to liberal tradition, family life is a protected zone, implying that the division of work between spouses is something the state should not attempt to change. The realities of everyday life and political intentions end up in conflict, and as a consequence women cannot enjoy full citizenship to the same extent as men.

    This dissertation demonstrates the importance of adding a gender perspective to critiques of the welfare state. Looking at the conditions of both men and women in both the private and public spheres poses new questions and also provides new answers to old questions.

  • 13.
    Kjellström, Sofia
    Linköping University, Department of Department of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Ansvar, hälsa och människa: en studie av idéer om individens ansvar för sin hälsa2005Doctoral thesis, monograph (Other academic)
    Abstract [en]

    That people should take responsibility for their health is a prominent contemporary idea. But what does such responsibility actually entail, and what demands are being put on people? The objective of the dissertation is to describe and critically examine various ideas on personal responsibility for health. In the first step, I identify and describe a wide variation of uses of responsibility and in the second step, I problematize them. The analyzed material consists of Swedish government reports and various types of health advice literature, including medical books and alternative medicine literature. I employ a framework of philosophical, social scientific, and developmental psychology theories on responsibility to critically examine the material.

    The study shows that taking responsibility involves both body and mind. Common ideas are that it requires maintaining a healthy lifestyle and managing one's self-care. But it is also considered important to take responsibility for beliefs and emotions and to adopt an accepting attitude. Another idea is that spiritual insights expand the scope of responsibility. Some important abilities required to take responsibility are conscious healthy choices, self-knowledge, and critical thinking. The view of responsibility is also influenced by individual factors, cultural beliefs about health and disease, and social structures. In the literature, health responsibility is regarded both as a social duty and as a never-ending task performed by an active individual.

    Finally, I use Robert Kegan's theory of adult development to show that taking responsibility imposes psychological demands on people's awareness. The demands are often higher than many people can manage. Some of the stress and poor health that people experience may be the product of an inability to manage all of life's demands. The developmental perspective also asserts that people can develop the requisite capacity. One conceivable conclusion of the study is that if we want people to take more responsibility, we should not only invest resources in health information, but also in measures that generate self-knowledge, reflection, and personal development.

  • 14.
    Lerner, Henrik
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    The Concepts of Health, Well-being and Welfare as Applied to Animals: A Philosophical Analysis of the Concepts with the Regard to the Differences Between Animals2008Doctoral thesis, monograph (Other academic)
    Abstract [en]

    This thesis is an analysis of the use and definition of the concepts health, well-being and welfare within the field called “the science of animal health and welfare”. The materials used are a literature survey of the field, qualitative interviews with Swedish veterinary surgeons and a study of the concepts in legislation concerning animals in England, Germany and Sweden. The main emphasis has been on theoretical definitions explicitly stated in the different texts or in the interviews. Two ways of distinguishing between animals are used: according to species and according to the role that animals have for humans. As a result it becomes salient whether the definitions have limits with regard to species or role.

    In the thesis a great number of definitions of the three concepts are interpreted, compared and criticised. As a result a limited number of definitions have been categorised and collected into clusters which fulfil minimal requirements of consistency and practicability.

    The analysis supports the use of all three concepts – health, well-being and welfare – since they are all needed for making crucial distinctions in the science of animal health and welfare.

  • 15.
    Lumma-Sellenthin, Antje
    Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Health Sciences.
    Learning professional skills and attitudes: Medical students' attitudes towards communication skills andgroup learning2013Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Medical education aims at forming students’ professional identity. This includes skills and attitudes such as communication and teamwork skills. One of the thesis’ aims is to identify students’ typical difficulties with learning communication skills, and to understand how these affect their identity development. Group discussions of student-patient interviews were video-taped, and selected discussions were transcribed and analyzed. Students had difficulties in establishing trustful relationships with their patients, asking about sensitive topics, responding empathetically, and with applying formal structures to the consultation. Students’ professional identity was supported by peer students’ and teachers’ comments, which created a common language and fostered selfmonitoring abilities. Another aim was to study the relationship between students* attitude towards communication training, group learning, and their self-regulatory skills. In a survey study, established instruments were combined with a new questionnaire. Four medical schools participated – two with traditional and two with problem-based curricula – in Sweden and Germany. Statistical analyses revealed that female students were more positive towards learning communication skills than male students were. Good self-regulatory skills were related to a positive attitude towards group learning and clinical experience before academic studies. It was concluded that early clinical experience benefits students’ selfregulated learning, and promotes a positive attitude towards communication training. Awareness of typical difficulties can facilitate the acquisition of coping strategies.

    List of papers
    1. Learning to talk and talking about talk: professional identity and communicative technology
    Open this publication in new window or tab >>Learning to talk and talking about talk: professional identity and communicative technology
    2007 (English)In: Medical Technologies and the Life World: The Social Construction of Normality / [ed] Sonja Olin-Lauritzen & Lars-Christer Hydén, London: Routledge , 2007, p. 18-39Chapter in book (Other academic)
    Abstract [en]

    Although the use of new health technologies in healthcare and medicine is generally seen as beneficial, there has been little analysis of the impact of such technologies on people's lives and understandings of health and illness. This book explores how new technologies not only provide hope for cure and well-being, but also introduce new ethical dilemmas and raise questions about the "natural" body. Focusing on the ways new health technologies intervene into our lives and affect our ideas about normalcy, the body and identity, New Health Technologies explores: how new health technologies are understood by lay people and patients how the outcomes of these technologies are communicated in various clinical settings how these technologies can alter our notions of health and illness and create "new illness." Written by authors with differing backgrounds in phenomenology, social psychology, social anthropology, communication studies and the nursing sciences, this book is essential reading for students andacademics of medical sociology, health and allied studies, and anyone with an interest in new health technologies.

    Place, publisher, year, edition, pages
    London: Routledge, 2007
    National Category
    Social Sciences Interdisciplinary
    Identifiers
    urn:nbn:se:liu:diva-35598 (URN)27890 (Local ID)04-1536-434-5 (ISBN)978-04-1536-434-8 (ISBN)27890 (Archive number)27890 (OAI)
    Available from: 2009-10-10 Created: 2009-10-10 Last updated: 2018-01-13Bibliographically approved
    2. Talking with patients and peers: Medical students difficulties with learning communication skills
    Open this publication in new window or tab >>Talking with patients and peers: Medical students difficulties with learning communication skills
    2009 (English)In: Medical teacher, ISSN 0142-159X, E-ISSN 1466-187X, Vol. 31, no 6, p. 528-534Article in journal (Refereed) Published
    Abstract [en]

    Background: Patient-centered communication skills, such as an empathic attitude towards patients and a holistic perspective on health, are difficult to acquire. Designing effective courses requires better understanding of the difficulties that students perceive with learning to talk with patients Aims: The study aimed at exploring students common difficulties with learning patient-centered communication skills. Methods: Group discussions about student-patient interviews were videotaped and analyzed with regard to issues that students perceived as difficult and to their reflections about these difficulties. Results: The students reported feeling intrusive as they explored the patients psychosocial situation. They avoided being empathic and felt insecure about coping adequately with emotionally loaded topics. Their difficulties were mainly due to insufficient understanding of the functional relations between psychosocial issues and health conditions. Moreover, students were insecure concerning the function of affective feedback in the diagnostic process. However, the group discussions generated a language for analyzing and structuring interviews that helped develop the students professional identities. Conclusions: Students experienced moral qualms about applying major aspects of patient-centered interviewing. Instruction in communication skills should aim at filling the students knowledge gaps and fostering their awareness and expression of emotional perceptions. Long-term relationships with patients could help develop patient-centered communication.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-19995 (URN)10.1080/01421590802208859 (DOI)
    Available from: 2009-08-24 Created: 2009-08-24 Last updated: 2017-12-13
    3. Medical students' attitudes towards group and self-regulated learning
    Open this publication in new window or tab >>Medical students' attitudes towards group and self-regulated learning
    2012 (English)In: International Journal of Medical Education, ISSN 2042-6372, E-ISSN 2042-6372, Vol. 3, p. 46-56Article in journal (Refereed) Published
    Abstract [en]

    Objectives: The study is aimed at exploring the association between beginning students' attitudes towards group learning and their awareness of learning strategies, to demographic variables and their exposure to problem-based or mixed curricula.

    Methods: The descriptive cross-sectional design included students (N = 351) from two medical schools with lecture-based and two with problem-based curricula from Germany and Sweden. Gender, age, personal and parents' practice experience within health care were assessed. A questionnaire was designed for measuring attitudes towards group and individual learning, awareness of learning strategies was assessed with the Metacognitive Awareness Inventory. The t-test for independent groups was applied to compare dependent variables between personal factors, and multivariate statistics to compare medical schools.

    Results: Students' personal work experience correlated with self-regulation (t(333) = -3.307; p = 0.001) and group learning experience (t(341) = -2.971; p = 0.003). Students from the German problem-based curriculum reported most experience with group learning (largest mean difference compared to the German lecture-based curriculum = 1.45 on a Likert scale from 1 to 7; SE = 0.181; p < 0.001), and were better at regulating their learning strategies than students from the Swedish lecture-based school (mean difference 0.18; SE = 0.181; p = 0.034).

    Conclusions: Students' clinical experience seemed to benefit self-regulation skills. Problem-based teaching methods and early interprofessional education appear to be favorable learning conditions for the development of professional skills.

    Place, publisher, year, edition, pages
    IJME, 2012
    Keywords
    Group learning attitudes, learning strategy awareness, problem-based learning, self-regulation, student attituds
    National Category
    Other Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-77929 (URN)10.5116/ijme.4f4a.0435 (DOI)
    Available from: 2012-05-31 Created: 2012-05-31 Last updated: 2017-12-07Bibliographically approved
    4. Students’ attitudes towards learning communication skills: correlating attitudes, demographic and metacognitive variables
    Open this publication in new window or tab >>Students’ attitudes towards learning communication skills: correlating attitudes, demographic and metacognitive variables
    2012 (English)In: International Journal of Medical Education, ISSN 2042-6372, E-ISSN 2042-6372, Vol. 3, p. 201-208Article in journal (Refereed) Published
    Abstract [en]

    Objectives: This study aimed at exploring the relationship of students' attitudes towards learning communication skills to demographic variables, metacognitive skills, and to the appreciation of patient-oriented care.

    Methods: The cross-sectional survey study involved first- and third-term students from two traditional and two problem-based curricula (N= 351). Demographic variables, attitudes towards communication skills learning, patient orientation, and awareness of learning strategies were assessed. Differences in attitude measures were assessed with t-tests and univariate comparisons. With multiple linear regressions predictor variables of students' attitudes towards communication skills learning and patient-oriented care were identified.

    Results: A positive attitude towards learning communica-tion skills was predicted by a caring patient orientation, self-regulation of learning strategies, and female gender (R2= 0.23; F (9,310) = 9.72; p < 0.001). Students' caring patient orientation was predicted by their attitudes towards learning communication skills, female gender, and higher age (R2= 0.23; F (9,307) = 13.48; p < 0.001). Students from a traditional curriculum were least interested in learning communication skills (F (3, 346) = 26.75; p <0.001).

    Conclusions: Students' attitudes towards learning communication skills and their caring patient orientation are interrelated. However, communication skills are considered as more positive by students with good self-regulatory skills. Early training of self-regulation and the training of communication skills in mixed-gender groups are recommended.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-91721 (URN)10.5116/ijme.5066.cef9 (DOI)
    Available from: 2013-04-30 Created: 2013-04-30 Last updated: 2017-12-06Bibliographically approved
  • 16.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Good Parents, Better Babies: An Argument about Reproductive Technologies, Enhancement and Ethics2008Doctoral thesis, monograph (Other academic)
    Abstract [en]

    This study is a contribution to the bioethical debate about new and possibly emerging reproductive technologies. Its point of departure is the intuition, which many people seem to share, that using such technologies to select non-disease traits – like sex and emotional stability - in yet unborn children is morally problematic, at least more so than using the technologies to avoid giving birth to children with severe genetic diseases, or attempting to shape the non-disease traits of already existing children by environmental means, like education. The study employs philosophical analysis for the purpose of making this intuition intelligible and judging whether it is justified.

    Different ways in which the moral problems posed by reproductive technologies are often framed in bioethical debates are criticised as inadequate for this task. In particular, it is argued that the intuition cannot fully be made sense of in terms of harm to the children that such technologies help create.

    The study attempts to elaborate an alternative to that broadly consequentialist approach, by drawing on Martin Heidegger’s philosophy of technology, Hans Jonas’s ethics, and Aristotle’s practical philosophy, as it has been received and developed in the hermeneutical tradition. It is suggested that reproductive choices, unlike decisions for already born children, are characterised by a peculiar one-sidedness: the future child appears to the parents as something wholly theirs to decide about, not as a concrete other with whom they must interact in a responsive and attuned way. This is problematic because it means that such choices cannot call upon the particularised moral understanding only gained in interpersonal encounters. In particular, it makes them easily shaped by various tendencies, to which parents are always susceptible, to relate to children in instrumentalising ways, and at risk of reinforcing such tendencies. However, this does not mean that all uses of reproductive technologies are equally troubling. When selecting against severe disease the parents can rely on a widely shared illness experience to escape the dangers that one-sidedness involves. It is concluded that the intuition under discussion, thus explicated and in some ways qualified, makes sense morally.

  • 17.
    Nord, Catharina
    Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) .
    The visible patient. Hybridity and inpatient ward design in a Namibian context.2003Doctoral thesis, monograph (Other academic)
    Abstract [en]

      Avhandlingsarbete om afrikanska patienters upplevelse av att vistas och vårdas på ett modernt sjukhus i Namibia.  

  • 18.
    Nygren, Victoria
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Mellan två samhällen: Inflyttat arbetsfolk i Linköping under det förindustriella 1800-talet2010Doctoral thesis, monograph (Other academic)
    Abstract [en]

    The purpose of the dissertation is to investigate the overall living situation for a selected group of individuals(one primary cohort of 19 men and one extended cohort of another 42 men, i.e. a total of 61 men) in a familycontext. This means, as far as the sources allow, trying to qualitatively understand and characterise socioeconomicconditions, family life and health, as it appears in the everyday life and in relation to the specifictime and the local urban environment. These individuals mainly belong to the lower social strata and havemoved to Linköping in the early 19th century before the regulations made it free to move into town. Possibilitiesand limitations, as well as events and acts are investigated in the intersection between individual and theenvironment, from a micro-historical point of view. In the purpose is thus also included to picture the localsociety in change and its relation to newcomers, as a foundation for further research regarding social change.Furthermore, the extended cohort is characterised from a micro-demographic perspective.

    The basic sources for this study are church books, i.e. records of catechetical meetings, records of births and deaths, records of weddings and migration. These sources are completed by several other sources like hospital records, records of fines, the chronicles of the county governor, records of the parish assembly and poor relief committee and the local newspapers, to get as rich a picture as possible. The individuals are followed throughout their life courses in town for several decades and are analysed in close connection to the local context. The latter also means that the local authorities are analysed in regard to their attitude and policy towards the migrants to town during the first half of the 19th century, i.e. before the 1847 legislation made migration free in the country.

    The town was not yet ready for these labourers who chose to stay there and start a family. They did thison their own responsibility, i.e. they settled outside the master´s household and risked being without thepatriarchal protection. The poor relief committee in town also rejected these families and tried to prevent theircoming into town. It is shown that the poor relief committee sometimes acted without legal support when ittried to make decisions regarding migration, based on estimated future incomes and the amount of children tofeed. Overall, the migration restriction was stricter in writing than it was in reality. Relatively few people weredenied access to the town and most who were tried individually got permission to move in on condition thatthey could show that they hade an employment and/or a personal guarantee. In this sense, the town was dividedin its attitude towards the servants and labourers in a manner typical of the situation. The burghersneeded the young, unmarried servants as labour force but were not interested in their staying in town to startfamilies. The men in the cohorts, and their families, on the other hand needed to find a new place to settlewhen the countryside ran out of opportunities. The life in the town became, for many of them, a life betweentwo societies. It was characterised by a constant struggle to support oneself, with a strain of a hidden economywhere for example begging was most likely important. This also meant a labourer´s life but with a meagresalary, sufficient only for one person, not for five or six. Many of the men in the cohorts were struck by the“urban penalty” with high mortality in late midlife. These labourers became a link between the crofter´s lifeand the labourer´s life. Many families were temporarily extended when they housed relatives and familymembers beyond the nuclear family and this is interpreted as a way of handling a tough situation. By their lifechoices these men and families contributed to an important social change.

  • 19.
    Omar, Faisal
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
    Just Waiting: Ethical Challenges in Priority Setting Posed by Organ Scarcity in Kidney Transplantation2011Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Over the last few decades kidney transplantation has transformed from an experimental treatment to the treatment of choice for end-stage renal disease. Unfortunately, however, the established organ donation models in many countries, relying chiefly on altruism, fail to motivate a sufficient number of donors. As a consequence, many lives which could be saved are lost, and others which can be improved are left to deteriorate.

    Dealing with the challenge of scarcity in kidney transplantation requires a dual approach. In the immediate term, we must ensure the fair distribution of kidney transplantation as a scarce medical resource. In the long term, we must find a policy level solution to mitigate the root issue of scarcity. The policy approach promoted in this thesis is the introduction of incentive based organ donation. Fair resource allocation, and incentive based donation are two themes which raise interesting normative questions, and ethical challenges. Each theme corresponds to two paperswhich form the basis for the thesis.

    Papers I &II, evaluate fairness in the priority setting processes underpinning access to kidney transplantation; this is done both within Sweden's four transplant centers and the Toronto General Hospital in Canada. The criteria, values, and procedures used in clinical decision-making are analyzed to identify barriers to fairness and how such barriers can be removed.

    Papers III and IV, propose incentive based living kidney donation and incentive based deceased donation, respectively, as policy solutions to the organ scarcity. The most frequently raised ethical objections against incentive based models are discussed in a bid to demonstrate the moral permissibility of incentive based organ donation.

    The discussion about fairness, and incentive based models, highlights that the ethical challenges raised by kidney scarcity are inherently difficult. While we may not find infallible solutions we certainly can work towards better solutions. We can create clinical priority setting processes, that while not perfect, move us closer towards increased fairness by removing clear obstacles to just distribution. We can create organ donation policies while not free of ethical challenges; do not shy away from all risk, or from asking the difficult questions.

    List of papers
    1. Priority setting in kidney transplantation: A qualitative study evaluating Swedish practices
    Open this publication in new window or tab >>Priority setting in kidney transplantation: A qualitative study evaluating Swedish practices
    Show others...
    2013 (English)In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 41, no 2, p. 206-215Article in journal (Refereed) Published
    Abstract [en]

    Background: Kidney transplantation is the established treatment of choice for end-stage renal disease; it increases survival, and quality of life, while being more cost effective than dialysis. It is, however, limited by the scarcity of kidneys. The aim of this paper is to investigate the fairness of the priority setting process underpinning Swedish kidney transplantation in reference to the Accountability for Reasonableness (A4R) framework. To achieve this, two significant stages of the process influencing access to transplantation are examined: assessment for transplant candidacy, and allocation of kidneys from deceased donors.

    Methods: Semi-structured interviews were the main source of data collection. Fifteen Interviewees included transplant surgeons, nephrologists, and transplant coordinators representing centers nationwide. Thematic analysis was used to analyze interviews, with the Accountability for Reasonableness framework serving as an analytical lens.

    Results: Decision-making both in the assessment and allocation stages are based on clusters of factors that belong to one of three levels: patient, professional, and the institutional levels. The factors appeal to values such as maximizing benefit, priority to the worst off, and equal treatment which are traded off.

    Discussion and Conclusions: The factors described in this paper and the values on which they rest on the most part satisfy the relevance condition of the accountability for reasonableness framework. There are however two potential sources for unequal treatment which we have identified: clinical judgment and institutional policies relating both to assessment and allocation. The appeals mechanisms are well developed and supported nationally which help to offset differences between centers. There is room for improvement in the areas of publicity and enforcement. The development of explicit national guidelines for assessing transplant candidacy and the creation of a central kidney allocation system would contribute to standardize practices across centers; and in the process help to better meet the conditions of fairness in reference to the A4R. The benefits of these policy proposals in the Swedish kidney transplant system merit serious consideration.

    Place, publisher, year, edition, pages
    Sage Publications, 2013
    Keywords
    Ethics, fairness, kidney transplantation, priority setting, Sweden
    National Category
    Social Sciences
    Identifiers
    urn:nbn:se:liu:diva-71309 (URN)10.1177/1403494812470399 (DOI)000315233100014 ()
    Available from: 2011-10-11 Created: 2011-10-11 Last updated: 2017-12-08Bibliographically approved
    2. Priority Setting in the Assessment for Kidney Transplant Candidacy: a Canadian Case Study
    Open this publication in new window or tab >>Priority Setting in the Assessment for Kidney Transplant Candidacy: a Canadian Case Study
    (English)Manuscript (preprint) (Other academic)
    Abstract [en]

    The benefits of kidney transplantation for treating kidney failure are well documented in terms of life expectancy, quality of life, and cost savings, making it the treatment of choice. It is however limited by the chronic shortage of kidneys. This study’s objective is to examine the fairness of the priority setting process underpinning the assessment for kidney transplant candidacy in one of Canada’s largest transplant programs at the Toronto General Hospital (TGH). This is done in reference to the Accountability for Reasonableness; a leading international framework in health care priority setting.

    The study relies on three sources for data collection: semi structured interviews, process observation, and review of relevant documents.

    The process underpinning the assessment for kidney transplantation is based on clusters of medical criteria reflecting the Canadian national consensus guidelines on eligibility for kidney transplantation. The process is permeated by ethical principles such as: maximizing benefit, equal treatment, and respect for autonomy; which are widely considered relevant in the distribution of scarce medical resources and in medical ethics generally. The criteria for assessment are well publicized and easily accessible while appeals through second opinions are well developed and supported. The process underpinning access to kidney transplantation at the TGH readily satisfies the conditions for fairness in references to the Accountability for Reasonableness framework.

    National Category
    Health Care Service and Management, Health Policy and Services and Health Economy
    Identifiers
    urn:nbn:se:liu:diva-71311 (URN)
    Available from: 2011-10-11 Created: 2011-10-11 Last updated: 2011-10-11Bibliographically approved
    3. Compensated Living Kidney Donation: A Plea for Pragmatism
    Open this publication in new window or tab >>Compensated Living Kidney Donation: A Plea for Pragmatism
    2010 (English)In: HEALTH CARE ANALYSIS, ISSN 1065-3058, Vol. 18, no 1, p. 85-101Article in journal (Refereed) Published
    Abstract [en]

    Kidney transplantation is the most efficacious and cost-effective treatment for end-stage renal disease. However, the treatments accessibility is limited by a chronic shortage of transplantable kidneys, resulting in the death of numerous patients worldwide as they wait for a kidney to become available. Despite the implementation of various measures the disparity between supply and needs continues to grow. This paper begins with a look at the current treatment options, including various sources of transplantable kidneys, for end-stage renal disease. We propose, in accordance with others, the introduction of compensated kidney donation as a means of addressing the current shortage. We briefly outline some of the advantages of this proposal, and then turn to examine several of the ethical arguments usually marshaled against it in a bid to demonstrate that this proposal indeed passes the ethics test. Using available data of public opinions on compensated donation, we illustrate that public support for such a program would be adequate enough that we can realistically eliminate the transplant waiting list if compensation is introduced. We urge a pragmatic approach going forward; altruism in living kidney donation is important, but altruism only is an unsuccessful doctrine.

    Keywords
    End-stage renal disease, Dialysis, Transplantation, Compensated donation, Ethics, Cost-effectiveness, Public opinions
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-54072 (URN)10.1007/s10728-008-0110-z (DOI)000274334600005 ()
    Available from: 2010-02-22 Created: 2010-02-22 Last updated: 2011-10-11
    4. Incentivizing deceased organ donation: A Swedish priority-setting perspective.
    Open this publication in new window or tab >>Incentivizing deceased organ donation: A Swedish priority-setting perspective.
    2011 (English)In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 39, no 2, p. 156-163Article in journal (Refereed) Published
    Abstract [en]

    AIMS: The established deceased organ donation models in many countries, relying chiefly on altruism, have failed to motivate a sufficient number of donors. As a consequence organs that could save lives are routinely missed leading to a growing gap between demand and supply. The aim of this paper is twofold; firstly to develop a proposal for compensated deceased organ donation that could potentially address the organ shortage; secondly to examine the compatibility of the proposal with the ethical values of the Swedish healthcare system.

    METHODS: The proposal for compensating deceased donation is grounded in behavioural agency theory and combines extrinsic, intrinsic and signalling incentives in order to increase prosocial behaviour. Furthermore the compatibility of our proposal with the values of the Swedish healthcare system is evaluated in reference to the principles of human dignity, needs and solidarity, and cost effectiveness.

    RESULTS: Extrinsic incentives in the form of a €5,000 compensation towards funeral expenses paid to the estate of the deceased or family is proposed. Intrinsic and signalling incentives are incorporated by allowing all or part of the compensation to be diverted as a donation to a reputable charity. The decision for organ donation must not be against the explicit will of the donor.

    CONCLUSIONS: We find that our proposal for compensated deceased donation is compatible with the values of the Swedish healthcare system, and therefore merits serious consideration. It is however important to acknowledge issues relating to coercion, commodification and loss of public trust and the ethical challenges that they might pose.

    Place, publisher, year, edition, pages
    SAGE, 2011
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-65395 (URN)10.1177/1403494810391522 (DOI)000288065000006 ()21239479 (PubMedID)
    Available from: 2011-02-07 Created: 2011-02-07 Last updated: 2017-12-11Bibliographically approved
  • 20.
    Rahmqvist, Mikael
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Tema Health and Society.
    Health and health care monitoring in a period of considerable social change: surveys of a Swedish population during the 1990s2003Doctoral thesis, comprehensive summary (Other academic)
  • 21.
    Roback, Kerstin
    Linköping University, Department of Medicine and Health Sciences, Health Technology Assessment. Linköping University, The Institute of Technology.
    Medical Device Innovation: The integrated processes of invention, diffusion and deployment2006Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    An increased use of medical devices has been assumed to be a major cause of rising healthcare expenditures. Nations around the world are trying to keep costs down, but strong incentives still exist for the development and use of new devices. Innovation is, however, never exclusively good or bad and it is not easy to evaluate the net effect. Theories and empirical research on innovation have been produced for more than 100 years. In this, the diffusion of innovations has attracted the most interest, while other areas, such as the integration of technologies, have been less thoroughly researched.

    This thesis presents a model of medical device innovation in hospitals – from the first idea and invention effort to regular use of a new technology. The suggested model is built on three fundaments: (1) academic innovation literature, (2) empirical studies, and (3) observations of on-going innovation processes. The model is a synthesis of the accumulated knowledge in different innovation research traditions, and of empirical studies of the Swedish healthcare system and the medical device industry. The aim is to give a comprehensive picture of the innovation process, and to provide a theoretical model, which can be used for studying and influencing the paths of medical device innovations into healthcare practice.

    In order to achieve a balanced rate of change, with long-term societal benefits, an inter-disciplinary approach is necessary in the planning and regulation of medical device innovation. The new model combines academic views with political/entrepreneurial and healthcare views. Innovation, in this model, is suggested to occur in three integrated activity domains: invention, diffusion, and deployment. A great number of factors that influence these activities are investigated and described, and different roles and incentives are discussed. Deviations from traditional innovation theory are for example: (a) integration of invention activities as having an impact on later events; (b) inclusion of the inventor/developer as a main actor also in the diffusion and deployment domains; (c) increased focus of the concept of technology cluster innovation, and (d) the rationality of use and abandonment of knowledge as factors to be included in the estimation of consequences of innovation.

    Finally, the thesis suggests a number of model and methodology improvements and policy implications for management of innovation in hospitals.

    List of papers
    1. Transfer of health care technology in university-industry research collaboration environment
    Open this publication in new window or tab >>Transfer of health care technology in university-industry research collaboration environment
    2001 (English)In: Engineering in Medicine and Biology Society. Proceedings of the 23rd Annual International Conference of the IEEE, 2001, Vol. 4, p. 3938-3941Conference paper, Published paper (Refereed)
    Abstract [en]

    The traditional innovation research has focused on the diffusion process and adoption of new technologies. This paper deals with health care technology in the early innovation stages preceding targeted development and marketing. A model of early research processes in the biomedical field and determinants of technology transfer will be presented. The study material is eleven projects in the Competence Center Noninvasive Medical Measurements (NIMED), Linkoping University, which is a collaboration center where academic researchers cooperate with industry and clinical departments. Data collection was made through semi-structured interviews. A qualitative approach has been adopted for data analysis. Research initiatives of the investigated projects do in most cases originate in the academic knowledge base and earlier connections in industry and health care play an important role in the formation of cooperation constellation. A number of internal factors are perceived as positive to project advancement, such as stable economy, proximity to clinical departments, and positive feedback from collaboration partners. Significant negative factors are all related to changes in cooperation structure. Clusters of related projects seem to be beneficial to research work and is an evident external factor which has to be added in a new model of technology transfer.

    National Category
    Medical Laboratory and Measurements Technologies
    Identifiers
    urn:nbn:se:liu:diva-14140 (URN)
    Available from: 2006-11-13 Created: 2006-11-13
    2. A New Fiberoptical Respiratory Rate Monitor for the Neonatal Intensive Care Unit
    Open this publication in new window or tab >>A New Fiberoptical Respiratory Rate Monitor for the Neonatal Intensive Care Unit
    Show others...
    2005 (English)In: Pediatric Pulmonology, ISSN 8755-6863, Vol. 39, no 2, p. 120-126Article in journal (Refereed) Published
    Abstract [en]

    A new technique for respiratory rate measurement in the neonatal intensive care unit, fiberoptic respirometry (FORE), was tested using a specially designed nasal adapter. The aim was to investigate the system's accuracy and compare it to the transthoracic impedance (TTI) method and manual counting (MC). Further, the relationship between accuracy and degree of body movement was investigated. Seventeen neonates of median gestational age 35 weeks were included in the study. Video recordings (synchronized with data recordings) were used for classification of body movement. Breaths per minute data were obtained for 23-32-min periods per child, and a subset of these included MC performed by experienced nurses. A Bland-Altman analysis showed low accuracy of both FORE and TTI. A >20% deviation from MC was found in 22.7% and 23.8% of observations for the two methods, respectively. Both methods had accuracy problems during body movement. FORE tended to underestimate respiratory rate due to probe displacement, while TTI overestimated due to motion artefacts. The accuracy was also strongly subject-dependent. The neonates were undisturbed by the FORE device. In some cases, though, it was difficult to keep the adapter positioned in the airway. Further development should, therefore, focus on FORE adapter improvements to maintain probe position over time.

    Keywords
    respiratory rate, neonatal monitoring, prematurity, optical sensors, intensive care, apnea
    National Category
    Engineering and Technology
    Identifiers
    urn:nbn:se:liu:diva-14141 (URN)10.1002/ppul.20137 (DOI)
    Available from: 2006-11-13 Created: 2006-11-13 Last updated: 2009-05-29
    3. Home informatics in healthcare: Assessment guidelines to keep up quality of care and avoid adverse effects
    Open this publication in new window or tab >>Home informatics in healthcare: Assessment guidelines to keep up quality of care and avoid adverse effects
    2003 (English)In: Technology and Health Care - European Society for Engineering and Medicine, ISSN 0928-7329, Vol. 11, no 3, p. 195-206Article in journal (Refereed) Published
    Abstract [en]

    Due to an ageing population and improved treatment possibilities, a shortage in hospital beds is a fact in many countries. Home healthcare schemes using information technology (IT) are under development as a response to this and with the intention to produce a more cost-effective care. So far it has been shown that home healthcare is beneficial to certain patient groups. The trend is a widening of the criteria for admission to home healthcare, which means treatment in the home of more severe conditions that otherwise would require in-hospital care. Home informatics has the potential to become a means of providing good care at home. In this process, it is important to consider what new risks will be encountered when placing electronic equipment in the home care environment. Continuous assessment and guidance is important in order to achieve a safe and effective care. Based on a review of current knowledge this paper presents an inventory of risks and adverse events specific to this area. It was found that risks and adverse events could stem from technology in itself, from human-technology interaction conditions or from the environment in which the technology is placed. As a result from the risk inventory, this paper proposes guidelines for the planning and assessment of IT-based hospital-at-home schemes . These assessment guidelines are specifically aimed at performance improvement and thus to be considered a complement to the more general guidelines on telehomecare adopted by the American Telemedicine Association (ATA) in October 2002.

    Keywords
    assessment, home informatics, hospital-at-home, telehomecare
    National Category
    Medical Laboratory and Measurements Technologies
    Identifiers
    urn:nbn:se:liu:diva-14142 (URN)
    Available from: 2006-11-13 Created: 2006-11-13
    4. Adoption of medical devices: Perspectives of professionals in Swedish neonatal intensive care
    Open this publication in new window or tab >>Adoption of medical devices: Perspectives of professionals in Swedish neonatal intensive care
    2007 (English)In: Technology and Health Care, ISSN 0928-7329, Vol. 15, no 3, p. 157-179Article in journal (Refereed) Published
    Abstract [en]

    Advances in biomedical engineering enable us to treat increasingly severe conditions. This implies an increased need for regulation and priority setting in healthcare, to ensure appropriate safety cautions and to avoid accelerating expenditures. This interview study investigates the mechanisms behind the adoption and use of medical devices through the subjective experiences of hospital staff working with devices for neonatal intensive care. The adoption was found to be primarily initiated by vendor activities, but professionals preferably sought information about functionality from close colleagues. Full integration of devices was sometimes not achieved, and even though the adopting units had good introduction routines, there was no systematic follow-up of how adopted devices had been integrated in the work practices. Diffusion variations were, however, mainly found for temporarily tested devices and not for permanently available technologies. Three factors were found to be the major explanatory variables of the adoption of medical devices: (1) the subjective expected value of the device, (2) information and learning, and (3) the innovativeness of the adopting unit.

    Keywords
    Diffusion, innovation, adoption, medical devices, neonatal intensive care, decision-making, healthcare management
    National Category
    Engineering and Technology
    Identifiers
    urn:nbn:se:liu:diva-14143 (URN)130.236.83.89 (DOI)
    Available from: 2006-11-13 Created: 2006-11-13 Last updated: 2009-05-12
  • 22.
    Sjögren, Elaine
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Division of Preventive and Social Medicine and Public Health Science.
    Psychosocial factors in adult life - in relation to gender, biological markers of stress and self-rated health2005Doctoral thesis, comprehensive summary (Other academic)
  • 23.
    Tinghög, Petter
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Migration, Stress and Mental Ill Health: Post-migration Factors and Experiences in the Swedish Context2009Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    This predominantly empirical dissertation deals with how socio-economic living conditions and immigrant-specific factors can be linked to immigrants’ mental ill health. It is also explored how cultural representations can affect stress and whether mental ill health is expressed differently among immigrants from Iraq and Iran than among individuals of Nordic origin. Moreover, a conceptual analysis is conducted, where a phenomenological conceptualisation of stress is outlined with a special focus on how this stress approach can be related to culture and migration.

    The empirical material consists of eleven in-depth interviews with Iraqi and Iranian immigrant women and two population-based surveys.

    The main findings of this thesis suggest as follows: 1) Mental ill health is more common among foreign-born than among native-born Swedes and can to a great extent be attributed to their poorer socio-economic living conditions. 2) Immigrants’ mental health is independently associated with different types of factors, such as traumatic episodes, socio-cultural adaptation level and socioeconomic living conditions. 3) The self-reporting mental health instruments, HSCL-25 and WHO (ten) Wellbeing Index, produce scores that are comparable between Scandinavians and immigrants of Middle Eastern descent. 4) Nonuniversal representations that can be found in Iraq and Iran can amplify, or even be necessary ingredients in certain types of stressful experiences among immigrant women from these countries. 5) The distinctions between universal and non-universal stress, and between immigrant/minority and non-immigrant/nonminority stress appear to be crucial for an adequate comprehension of immigrants’ stressful experiences.

    List of papers
    1. To what extent may the association between immigrant status and mental illness be explained by socioeconomic factors?
    Open this publication in new window or tab >>To what extent may the association between immigrant status and mental illness be explained by socioeconomic factors?
    2007 (English)In: Social Psychiatry and Psychiatric Epidemiology, ISSN 0933-7954, E-ISSN 1433-9285, Vol. 42, no 12, p. 990-996Article in journal (Refereed) Published
    Abstract [en]

    Background Immigrants in Sweden have a higher rate of mental illness than the native Swedes. This study investigated to what extent the association between immigrant status and mental illness can be explained by a different distribution of known risk factors for impaired mental health between groups of immigrants and persons born in Sweden.

    Methods The study is based on data from the Swedish PART-study, designed to identify risk factors for, and social consequences of, mental illness. The study population consists of a random sample of 10,423 Swedish citizens, whereof 1,109 were immigrants. The data was collected in the year 2000. The immigrants were divided into three groups based on country of origin (Scandinavians born outside Sweden, Europeans born outside Scandinavia, non-Europeans). The occurrence of mental illness among immigrants and native Swedes were compared not adjusting and adjusting for indicators of socioeconomic advantage/disadvantage (education, income, labour market position, etc). Mental illness was approximated with the WHO (ten) wellbeing index scale and depressive symptoms were measured with the major depression inventory scale (MDI).

    Results Immigrants’ excess risk for low subjective wellbeing was completely accounted for by adjustment for known risk factors in all the immigrant groups. However, social-economic disadvantages could not account for the non-European immigrants’ higher prevalence of depression (MDI), although the increased relative risk found in univariate analyses was substantially reduced.

    Conclusions The findings in this study suggest that the association between immigrant status and mental illness appears above all to be an effect of a higher prevalence of social and economic disadvantage.

    Place, publisher, year, edition, pages
    Springer Link, 2007
    Keywords
    Immigrants, mental illness, prevalence, Sweden, risk factors
    National Category
    Social Sciences Interdisciplinary
    Identifiers
    urn:nbn:se:liu:diva-18212 (URN)10.1007/s00127-007-0253-5 (DOI)
    Available from: 2009-05-12 Created: 2009-05-12 Last updated: 2018-01-13Bibliographically approved
    2. Immigrant‐ and non‐immigrant‐specific factors’ association with mental ill health among immigrants in Sweden
    Open this publication in new window or tab >>Immigrant‐ and non‐immigrant‐specific factors’ association with mental ill health among immigrants in Sweden
    2010 (English)In: International Journal of Social Psychiatry, ISSN 0020-7640, E-ISSN 1741-2854, Vol. 56, no 1, p. 74-93Article in journal (Refereed) Published
    Abstract [en]

    Background: It has often been shown that immigrants are particularly at risk for mental ill health. The aim of the study was to investigate the association of immigrant‐ and non‐immigrant‐specific factors with mental ill health, within a diverse immigrant population.

    Method: An extensive questionnaire was sent out to a stratified random sample of three immigrant populations from Finland, Iraq and Iran. The 720 respondents completed a Swedish, Arabic or Persian version of the questionnaire including the WHO (ten) wellbeing index and the HSCL‐25.

    Results: The results indicate that mental ill health among immigrants is independently associated with non‐immigrant‐specific factors (i.e. a high number of types of traumatic episodes, divorced or widow/widower, a poor social network, economic insecurity and being a woman) and immigrant‐specific factors (i.e. a low level of socio‐cultural adaptation). These results were obtained regardless of whether mental ill health was operationalised as low subjective wellbeing or a high symptom level of anxiety/depression.

    Conclusions: These findings support the notion that mental ill health among immigrants is a multi‐faceted phenomenon that needs to be tackled within a wide range of sectors − e.g. the health care system, the social service sector and of course the political arena.

    Keywords
    Migration, mental ill health, Sweden, risk factors, living conditions, trauma
    National Category
    Social Sciences Interdisciplinary
    Identifiers
    urn:nbn:se:liu:diva-18213 (URN)10.1177/0020764008096163 (DOI)
    Available from: 2009-05-12 Created: 2009-05-12 Last updated: 2018-01-13Bibliographically approved
    3. Cross‐cultural equivalence of HSCL‐25 and WHO (ten) Wellbeing Index: findings from a population‐based survey of immigrants and non‐immigrants in Sweden
    Open this publication in new window or tab >>Cross‐cultural equivalence of HSCL‐25 and WHO (ten) Wellbeing Index: findings from a population‐based survey of immigrants and non‐immigrants in Sweden
    2010 (English)In: Community mental health journal, ISSN 0010-3853, E-ISSN 1573-2789, Vol. 46, no 1, p. 65-76Article in journal (Refereed) Published
    Abstract [en]

    The aim of this study was to investigate whether the Hopkins Symptom Checklist (HSCL‐25) and the WHO (ten) Wellbeing Index are cross‐culturally equivalent by comparing Scandinavians with Middle Eastern immigrants in Sweden. The study population consisted of a stratified random sample of nativeborn Swedes and immigrants from Finland, Iraq and Iran. Both instruments loaded on a single factor in the respective populations. A few of the items did however not discriminate or predict equally well in the groups, nonetheless it was found to only marginally influenced the instruments’ total scores in both groups. The analyses also revealed that the groups had similar intercept and slope when the exogenous factor traumatic episodes was used to predict the measurement scores, supporting scalar equivalency. In conclusion, the results support the use of these instruments in population‐based surveys within multicultural Western societies.

    Place, publisher, year, edition, pages
    Springer-Verlag New York, 2010
    Keywords
    Cross‐cultural equivalence, Immigrants, Hopkins Symptom Checklist (HSCL‐25), WHO Wellbeing Index, Population‐based
    National Category
    Social Sciences Interdisciplinary
    Identifiers
    urn:nbn:se:liu:diva-18214 (URN)10.1007/s10597-009-9227-2 (DOI)000274399000008 ()
    Available from: 2009-05-12 Created: 2009-05-12 Last updated: 2018-01-13Bibliographically approved
    4. A phenomenological approach to the study of stress among immigrants: the case of Iraqi and Iranian women in Sweden
    Open this publication in new window or tab >>A phenomenological approach to the study of stress among immigrants: the case of Iraqi and Iranian women in Sweden
    (English)Manuscript (Other academic)
    Abstract [en]

    This study begins with the outlining of a general phenomenological theory of stress, which subsequently is applied to eleven Iraqi and Iranian migrant women’s own accounts of life in Sweden. The analysis of the interviews suggested that domestic disputes and intergenerational conflicts may become particularly stressful in that they are often amplified by incompatible Western and Non‐Western representations. The detected stressful experiences are analysed and structured to elucidate their character. Finally, a typology of stressful experiences in the new environment based on the distinctions between immigrant/minority‐specific and non‐immigrant/‐ minority‐specific stress, as well as between culturogenic and non‐culturogenic stress, is presented and defended.

    Keywords
    Phenomenology, Stress, Immigrants, Women, Iraq, Iran
    National Category
    Social Sciences Interdisciplinary
    Identifiers
    urn:nbn:se:liu:diva-18215 (URN)
    Available from: 2009-05-12 Created: 2009-05-12 Last updated: 2018-01-13Bibliographically approved
  • 24.
    Wiréhn, Ann-Britt
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
    A Data-Rich World: Population‐based registers in healthcare research2007Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Advances and integration of information and communication technologies into healthcare systems offer new opportunities to improve public health worldwide. In Sweden, there are already unique possibilities for epidemiological research from registers because of a long tradition of centralized data collection into population-based registers and their allowance for linkage. The growing efficiency of automated digital storage provides growing volumes of archived data that increases the potential of analyses further.

    The purpose of this thesis can be divided into two parallel themes: illustrations and discussions of the use and usefulness of population-based registers on the one hand, and specific research questions in epidemiology and healthcare research on the other. The research questions are addressed in separate papers.

    From the Swedish Cancer Registry, 25 years of incidence data on testicular cancer was extracted for a large cohort. Record linkage to survey data on serum cholesterol showed a highly significant positive association, suggesting that elevated serum cholesterol concentration is a risk factor for testicular cancer. Since the finding is the first of its kind and because of wide confidence intervals further studies are needed to confirm the association.

    Östergötland County council’s administra-tive database (the Care Data Warehouse in Östergötland (CDWÖ)) provided data for preva-lence estimations of four common chronic diseases.

    The prevalence rate agreed very well with previous estimates for diabetes and fairly well with those for asthma. For hypertension and chronic obstructive pulmonary disease, the observed rates were lower than previous prevalence estimates. Data on several consecutive years covering all healthcare levels are needed to achieve valid prevalence estimates.

    CDWÖ data was also used to analyse the impact of diabetes on the prevalence of ischemic heart disease. Women had higher diabetes/non-diabetes prevalence rate ratios across all ages. The relative gender difference remained up to the age of 65 years and thereafter decreased considerably.

    The age-specific direct healthcare cost of diabetes was explored using data from the CDWÖ, the county council’s Cost Per Patient database and the Swedish Prescribed Drug Register. The cost per patient and the relative magnitude of different cost components varied considerably by age, which is important to consider in the future planning of diabetes management.

    The Cancer Registry was established mainly as a basis for epidemiological surveillance and research, exemplified in this thesis by a study on testicular cancer. In contrast, the newly established and planned healthcare databases in different Swedish counties are mainly for managerial purposes. As is shown in this thesis, these new databases may also be used to address problems in epidemiology and healthcare research.

    List of papers
    1. Serum cholesterol and testicular cancer incidence in 45 000 men followed for 25 years
    Open this publication in new window or tab >>Serum cholesterol and testicular cancer incidence in 45 000 men followed for 25 years
    2005 (English)In: British Journal of Cancer, ISSN 0007-0920, Vol. 92, no 9, p. 1785-1786Article in journal (Refereed) Published
    Abstract [en]

    In a 25-year follow-up study of 44 864 men with measured serum cholesterol levels, the testicular cancer hazard ratios for the serum cholesterol categories 5.7–6.9 and ≥7.0 mmol l-1 vs the reference category (<5.7 mmol l-1) were 1.3 and 4.5, respectively; P-value for trend=0.005. This highly significant association suggests that high-serum cholesterol is a risk factor for testicular cancer.

    Keywords
    epidemiology, testicular neoplasm, cholesterol
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-12757 (URN)10.1038/sj.bjc.6602539 (DOI)