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  • 1.
    Bygren, Lars Olov
    et al.
    Department of Bioscience and Nutrition, Karolinska, Huddinge, Sweden .
    Tinghög, Petter
    Department of Clinical Neuroscience, Karolinska Institutet, Solna, Sweden.
    Carstensen, John
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Edvinsson, Sören
    The Demographic Database, University of Umeå, Sweden.
    Kaati, Gunnar
    Department of Bioscience and Nutrition, Karolinska Institutet, Huddinge, Sweden .
    Pembrey, Marcus E
    Institute of Child Health, University College London, UK.
    Sjöström, Michael
    Department of Bioscience and Nutrition, Karolinska Institutet, Huddinge, Sweden .
    Change in paternal grandmothers' early food supply influenced cardiovascular mortality of the female grandchildren2014In: BMC Genetics, ISSN 1471-2156, E-ISSN 1471-2156, Vol. 15, no 12Article in journal (Refereed)
    Abstract [en]

    Background

    This study investigated whether large fluctuations in food availability during grandparents' early development influenced grandchildren's cardiovascular mortality. We reported earlier that changes in availability of food - from good to poor or from poor to good - during intrauterine development was followed by a double risk of sudden death as an adult, and that mortality rate can be associated with ancestors´ childhood availability of food. We have now studied transgenerational responses (TGR) to sharp differences of harvest between two consecutive years´ for ancestors of 317 people in Överkalix, Sweden.

    Results

    The confidence intervals were very wide but we found a striking TGR. There was no response in cardiovascular mortality in the grandchild from sharp changes of early exposure, experienced by three of the four grandparents (maternal grandparents and paternal grandfathers). If, however, the paternal grandmother up to puberty lived through a sharp change in food supply from one year to next, her sons´ daughters had an excess risk for cardiovascular mortality (HR 2.69, 95% confidence interval 1.05-6.92). Selection or learning and imitation are unlikely explanations. X-linked epigenetic inheritance via spermatozoa seemed to be plausible, with the transmission, limited to being through the father, possibly explained by the sex differences in meiosis.

    Conclusion

    The shock of change in food availability seems to give specific transgenerational responses.

  • 2.
    Bäckman, Karin
    et al.
    Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Health Sciences.
    Broqvist, Mari
    Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Health Sciences.
    Carlsson, Per
    Linköping University, Department of Medical and Health Sciences, Health Technology Assessment and Health Economics. Linköping University, Faculty of Health Sciences.
    Garpenby, Peter
    Linköping University, Department of Medical and Health Sciences, Health Technology Assessment and Health Economics. Linköping University, Faculty of Health Sciences.
    Jacobsson, Catrine
    PrioriteringsCentrum.
    Johansson, Per
    Linköping University, Department of Medical and Health Sciences, Health Technology Assessment and Health Economics. Linköping University, Faculty of Health Sciences.
    Karlsson, Erling
    PrioriteringsCentrum.
    Larsson, Sven
    PrioriteringsCentrum.
    Lund, Karin
    PrioriteringsCentrum.
    Liss, Per-Erik
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Nedlund, Ann-Charlotte
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Arts and Sciences.
    Vårdens alltför svåra val?: kartläggning av prioriteringsarbete och analys av riksdagens principer och riktlinjer för prioriteringar i hälso- och sjukvården2007Report (Other academic)
    Abstract [sv]

    PrioriteringsCentrum har på uppdrag av Socialstyrelsen genomfört en kartläggning av på vilket sätt hälso- och sjukvårdens huvudmän och andra centrala aktörer arbetar med prioriteringar och har utvärderat hur detta arbete överensstämmer med intentionerna i riksdagens beslut om prioriteringar. Vi har även analyserat innehållet i och tillämpningen av riksdagens riktlinjer för prioriteringar i hälso- och sjukvården. Det har skett genom en etisk analys och mot bakgrund av ett stort antal intervjuer i landsting och kommuner samt med representanter för statliga myndigheter och yrkesorganisationer och med ledning av vad som framkommit i tidigare uppföljningar. Vi föreslår i rapporten ett anta förändringar och förtydliganden av riktlinjerna.

    Vi kan konstatera att sättet att arbeta med prioriteringar i landsting och kommuner inte är helt olikt det som gällde när Prioriteringsdelegationen redovisade en motsvarande uppföljning år 2001. Fortfarande finns knappast några öppna beslut om fördelning och prioritering av resurser om man med öppenhet avser att beslutsfattaren medvetet överväger flera alternativ och att grunderna för besluten är kända för dem som önskar ta del av dem.

    I situationer då tillgängliga resurser inte befinner sig i paritet med  önskvärda ambitioner får sjukvårdspersonalen ta det största ansvaret för att besluta om och genomföra ransonering av vården. Förutom på chefsnivå tycks dock sjukvårdpersonal fortfarande i liten utsträckning vara medveten om de etiska principer som enligt riksdagsbeslutet ska styra prioriteringar i vården. Få känner till den etiska plattformen med de tre etiska principerna. Lokala mallar eller styrdokument för prioriteringar är ovanliga. Det saknas nödvändiga förutsättningar för att tillämpa riksdagens prioriteringsbeslut och det finns inte heller några tydliga strategier för hur man vill skapa sådana förutsättningar inom landstingen.

    Den kommunala vård- och omsorgsverksamheten upplever sig fortfarande i ringa utsträckning berörd av den etiska plattformen och prioriteringsprinciperna. Någon gemensam prioritering mellan huvudmännen sker knappast alls.

    Medborgarna är i mycket liten utsträckning involverade i prioriteringsarbetet. Den ökade öppenheten gentemot brukare innebär oftast att viss information om prioriteringar sker genom traditionella kanaler som patientorganisationer, pensionärsråd och handikappråd och synpunkter inhämtas via allmänna patientenkäter medan klagomål hanteras genom patientnämnder.

    Vi har också funnit tydliga skillnader när det gäller hur arbetet med prioriteringar bedrivs idag jämfört med för sex år sedan. Genom Socialstyrelsen och Läkemedelsförmånsnämnden har staten tagit  ledningen när det gäller att visa hur prioriteringar kan göras på ett systematiskt och öppet sätt. Detta arbete har resulterat i en tydlig metodutveckling. Idag finns det dessutom flera exempel på konkret utvecklingsarbete och samverkan mellan huvudmän kring det vidare begreppet kunskapsstyrd vård till vilket systematiska prioriteringar är starkt relaterat. Vi kan också notera olika initiativ till vertikala prioriteringar i verksamheten där det framförallt är läkarkåren som engagerat sig; men också enstaka försök med systematiska politiska prioriteringar. Det finns dessutom flera lovande utvecklingsprojekt rörande prioriteringar som initierats av och drivs av sjukvårdspersonal både lokalt och nationellt. Yrkesförbunden är också mer aktiva idag när det gäller att sprida kunskap om prioriteringar....

  • 3.
    Carlsson, E
    et al.
    Sahlgrenska University Hospital, Gothenburg, Sweden.
    Pettersson, M
    University of Gothenburg, Sweden .
    Hydén, Lars-Christer
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences. University of Gothenburg, Sweden .
    Öhlen, J
    University of Gothenburg, Sweden .
    Friberg, F
    University of Gothenburg, Sweden .
    Structure and content in consultations with patients undergoing surgery for colorectal cancer2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 6, p. 820-826Article in journal (Refereed)
    Abstract [en]

    PURPOSE:

    To explore the structure and content of pre-planned consultations as part of the care and treatment of patients undergoing surgery for colorectal cancer.

    METHODS:

    The study was based on 50 transcripts of audio-recorded pre-planned consultations between seven patients and 36 healthcare professionals from the time of diagnosis, pre-operative consultation, discharge consultation and pathology report in a colorectal unit.

    RESULTS:

    The spread of consultation time between professions was considerable. Total mean consultation time for patients during the care process (7 consultations/patient) was 111 min (range 83-191). The mean consultation time for surgeons was 18 min (7-40), anaesthesiologists 12 min (5-18) and nurses 14 min (5-49). Patients took up 40% of the word space, healthcare professionals used 59% and significant others 1%. Word space changed in such a way that the patient became more active towards the final consultation. Neither during the diagnosis consultation nor during the pre-operative consultation did the patients meet the operating surgeon. Six major subjects emerged: general health, diagnosis, surgical procedure, pre-operative preparations, recovery and treatment and follow-up.

    CONCLUSIONS:

    There is a need for clearer structure in the consultations. Most consultations lacked a clear introduction to the subject of the conversation. The study makes it possible to develop methods and structure for supporting conversations in which the patient is given space to help with the difficult issues present after undergoing surgery for colorectal cancer. The study also contributes to providing knowledge of how to organise surgical consultations in order to optimise person-centeredness, teamwork and clinical efficiency.

     

  • 4.
    Eriksson, Hanna
    et al.
    Karolinska Institutet, Karolinska University Hospital Solna, Stockholm, Sweden.
    Lyth, Johan
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in West Östergötland, Research & Development Unit in Local Health Care. Östergötlands Läns Landsting, Center for Health and Developmental Care, Regional Cancer Center South East Sweden.
    Månsson-Brahme, Eva
    Karolinska Institutet, Karolinska University Hospital Solna, Stockholm, Sweden.
    Frohm-Nilsson, Margareta
    Karolinska Institutet, Karolinska University Hospital Solna, Stockholm, Sweden.
    Ingvar, Christian
    Lund University, Sweden.
    Lindholm, Christer
    Östergötlands Läns Landsting, Center for Health and Developmental Care, Regional Cancer Center South East Sweden.
    Naredi, Peter
    Sahlgrenska Academy, Gothenburg, Sweden.
    Stierner, Ulrika
    Sahlgrenska University Hospital, Gothenburg, Sweden.
    Carstensen, John
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Hansson, Johan
    Karolinska Institutet, Karolinska University Hospital Solna, Stockholm, Sweden.
    Later stage at diagnosis and worse survival in cutaneous malignant melanoma among men living alone: a nationwide population-based study from Sweden2014In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 32, no 13, p. 1356-1364Article in journal (Refereed)
    Abstract [en]

    PURPOSE:

    To investigate the association between cohabitation status, clinical stage at diagnosis, and disease-specific survival in cutaneous malignant melanoma (CMM).

    METHODS:

    This nationwide population-based study included 27,235 patients from the Swedish Melanoma Register diagnosed with a primary invasive CMM between 1990 and 2007 and linked data to nationwide, population-based registers followed up through 2012.

    RESULTS:

    After adjustment for age at diagnosis, level of education, living area, period of diagnosis, and tumor site, the odds ratios (ORs) of higher stage at diagnosis were significantly increased among men living alone versus men living with a partner (stage II v stage I: OR, 1.42; 95% CI, 1.29 to 1.57; stage III or IV v stage I: OR, 1.43; 95% CI, 1.14 to 1.79). The OR for stage II versus stage I disease was also increased among women living alone (OR, 1.15; 95% CI, 1.04 to 1.28). After adjustments for the factors listed earlier, the CMM-specific survival was significantly decreased among men living alone (hazard ratio [HR] for death, 1.48; 95% CI, 1.33 to 1.65; P < .001). After additional adjustments for all potential and established prognostic factors, CMM-specific survival among men living alone versus men living with a partner remained significantly decreased (HR, 1.31; 95% CI, 1.18 to 1.46; P < .001), suggesting a residual adverse effect on survival not accounted for by these parameters.

    CONCLUSION:

    In all age groups among men, living alone is significantly associated with reduced CMM-specific survival, partially attributed to a more advanced stage at diagnosis. This emphasizes the need for improved prevention and early detection strategies for this group.

  • 5.
    Eriksson, Hanna
    et al.
    Karolinska Institutet, Stockholm, Sweden.
    Lyth, Johan
    Linköping University, Department of Clinical and Experimental Medicine, Oncology. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Health and Developmental Care, Regional Cancer Center South East Sweden.
    Månsson-Brahme, Eva
    Karolinska Institutet, Stockholm, Sweden.
    Frohm-Nilsson, Margareta
    Karolinska Institutet, Stockholm, Sweden.
    Ingvar, Christian
    Lund University, Sweden .
    Lindholm, Christer
    Östergötlands Läns Landsting, Center for Health and Developmental Care, Regional Cancer Center South East Sweden.
    Naredi, Peter
    Umeå University, Sweden .
    Stierner, Ulrika
    Sahlgrenska University Hospital, Gothenburg, Sweden.
    Wagenius, Gunnar
    Uppsala University, Sweden .
    Carstensen, John
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Hansson, Johan
    Karolinska Institutet, Stockholm, Sweden.
    Low level of education is associated with later stage at diagnosis and reduced survival in cutaneous malignant melanoma: A nationwide population-based study in Sweden2013In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 49, no 12, p. 2705-2716Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    A worse outcome has been reported for cutaneous malignant melanoma (CMM) patients with low socioeconomic status. We have investigated the association between level of education, clinical stage at diagnosis (stage at diagnosis) and CMM-specific survival in Sweden.

    METHODS:

    We identified 27,235 patients from the Swedish Melanoma Register diagnosed with a primary invasive CMM between 1990 and 2007 and linked data to nationwide, population-based, health and census registers with a follow-up to 2010.

    RESULTS:

    The odds ratio (OR) of higher disease stage at diagnosis was significantly increased in lower education groups (OR stage II versus I=1.6; 95% confidence interval (CI)=1.5-1.7. OR stage III-IV versus I=2.3; 95% CI=1.8-2.9). The risk of dying of CMM, was significantly increased in patients with low (hazard ratio (HR) low versus high=2.02; 95% CI=1.80-2.26; p<0.0001) and intermediate (HR intermediate versus high=1.35; 95% CI=1.20-1.51; p<0.0001) level of education. After adjustment for age, gender, stage at diagnosis and other known prognostic factors, the HRs remained significant for low versus high (HR=1.13; 95% CI=1.01-1.27; p=0.04) but not for intermediate versus high (HR=1.11; 95% CI=0.99-1.24; p=0.08) education. The HR associated with low level of education was significantly higher among female patients, patients <55years, patients with truncal tumours and during the first 5years after diagnosis.

    CONCLUSION:

    Lower level of education is associated with reduced CMM-specific survival, which may at least partially be attributed to a more advanced stage at diagnosis. These results emphasise the need for improved early detection strategies.

  • 6.
    Garpenby, Peter
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Nedlund, Ann-Charlotte
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Ordnat införande av metoder i klinisk verksamhet: En studie av försök med dialogmöten inom Landstinget i Östergötland2013Report (Other academic)
    Abstract [en]

    During 2010 to 2012 Östergötland County Council together with the Department of Medical and Health Sciences at Linköping University developed and tested a programme, The Östergötland Model, where research-based knowledge were compiled and presented in dialogic meetings among clinical units within the county council. The intention was to adapt and adjust a Canadian model of dialogic intervention, “The Alberta Ambassador Program”, to a Swedish healthcare context. This was done in order to better understand how research-based knowledge and practise-based knowledge can be systematically integrated in a real-world health care context.

    The working group, which was commissioned by the Advisory Board on Medical Technology at Östergötland County Council to manage this programme, organised 14 dialogic meetings at clinical units and health centres during 2012.

    The aim of this report is to analyse and discuss the development and the implemention of the local programme, The Östergötland Model, based on an analytical framework for “knowledge brokering” – a form for knowledge transition in health care. The findings will also be compared with the Canadian model in order to identify differences and similarities between these two models.

    The main data source is observations of the meetings of the Advisory Board and its working group, supplemented with a web questionnaire and semi-structured interviews with key participants.

    The report shows that the programme in Östergötland had elements from the different forms of “knowledge brokering”. One was “linkage and exchange” that emphasises the meeting between research and practise. However, as the programme was carried out the element “knowledge management” became more pronounced since a lot of work was put into establishing and disseminating a certain kind of knowledge. A third element, “capacity building” which is supporting practising clinicians to formulate issues that can be answered by research-based knowledge, can be identified but was never particularly prominent in the programme.

    A marked difference between the two programmes was that in Alberta the aimed effects was in a sense indirect by giving participants the role as opinion leaders with the task to communicate information and knowledge in the health care system. As a contrast, in Östergötland the ambition was to directly influence the behaviours at specific clinical units.

    Even though a great part of the work in the initial phase of the programme concerned the development of a document presenting evidence on the medical effects, this was not the central aim of the programme in Östergötland. Moreover, to compile evidence is not anything unique but rather an ordinary process in the health-care context. Instead, the most important part of this programme is the dialogic meeting where the participants were given the opportunity to reflect over their own way of acting and possibly to change in direction of a more systematic integration of research-based knowledge and practice-based knowledge in their clinics and health centres. Among the participants this form of implementing knowledge proved to be of great interest. Therefore, as this report shows, there are good reasons to reflect over how new forms of dialogue can be incorporated into the health-care organisation and thus form a process where both research-based and practice-based knowledge are integrated. This report argues that mediating bodies have an important role in facilitating such a dialogic process.

  • 7.
    Garpenby, Peter
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Nedlund, Ann-Charlotte
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Organisering av prioriteringsprocessen2013In: Att välja rättvist: om prioriteringar i hälso- och sjukvården / [ed] Per Carlsson och Susanne Waldau, Lund: Studentlitteratur, 2013, 1, p. 119-135Chapter in book (Other academic)
    Abstract [sv]

    Hälso- och sjukvårdens resurser räcker inte till alla behov och önskemål från patienter och medborgare, vilket gör att personal och beslutsfattare hamnar i svåra situationer. Hur ska vi veta att det är rätt patienter som tvingas stå tillbaka? Att välja rättvist tar upp centrala begrepp och etiska principer kring prioriteringar. Boken beskriver även metoder för att göra prioriteringar på ett systematiskt sätt och erfarenheter av såväl nationella som internationella prioriteringar.

    Prioriteringsbeslut fattas på alla nivåer och kan gälla fördelning av resurser till olika verksamheter, behandlingsbeslut av enskilda patienter eller investeringar i nya medicinska metoder. Boken ger förslag på hur beslutsunderlagen kan förbättras. Här ges anvisningar om hur man mäter behov och nytta hos patientgrupper och i befolkningen, hur kostnadseffektivitet beräknas och hur man skapar ett kunskapsunderlag. På så sätt får läsaren inte bara ta del av prioriteringarnas teori utan även av deras praktik, inte minst genom konkreta exempel på hur öppna prioriteringar i dag tillämpas i svensk hälso- och sjukvård.

    Boken är avsedd för dig som arbetar kliniskt eller planerar att arbeta med prioriteringar – nationellt, i landsting eller i kommuner. Boken ger även en värdefull inblick för dig som vill lära mer om hur vårdens svåra val ska kunna hanteras i framtiden.

  • 8.
    Gnosa, Sebastian
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Health Sciences.
    Zhang, H.
    University of Örebro, Sweden .
    Brodin Patcha, Veronika
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Health Sciences.
    Carstensen, John
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Adell, G.
    Karolinska University Hospital, Sweden .
    Sun, Xiao-Feng
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
    AEG-1 expression is an independent prognostic factor in rectal cancer patients with preoperative radiotherapy: a study in a Swedish clinical trial2014In: British Journal of Cancer, ISSN 0007-0920, E-ISSN 1532-1827, Vol. 111, no 1, p. 166-173Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Preoperative radiotherapy (RT) is widely used to downstage rectal tumours, but the rate of recurrence varies significantly. Therefore, new biomarkers are needed for better treatment and prognosis. It has been shown that astrocyte elevated gene-1 (AEG-1) is a key mediator of migration, invasion, and treatment resistance. Our aim was to analyse the AEG-1 expression in relation to RT in rectal cancer patients and to test its radiosensitising properties.

    METHODS:

    The AEG-1 expression was examined by immunohistochemistry in 158 patients from the Swedish clinical trial of RT. Furthermore, we inhibited the AEG-1 expression by siRNA in five colon cancer cell lines and measured the survival after irradiation by colony-forming assay.

    RESULTS:

    The AEG-1 expression was increased in the primary tumours compared with the normal mucosa independently of the RT (P<0.01). High AEG-1 expression in the primary tumour of the patients treated with RT correlated independently with higher risk of distant recurrence (P=0.009) and worse disease-free survival (P=0.007). Downregulation of AEG-1 revealed a decreased survival after radiation in radioresistant colon cancer cell lines.

    CONCLUSIONS:

    The AEG-1 expression was independently related to distant recurrence and disease-free survival in rectal cancer patients with RT and could therefore be a marker to discriminate patients for distant relapse.

  • 9.
    Guntram, Lisa
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Creating, maintaining and questioning (hetero)relational normality in narratives about vaginal reconstruction2013In: Feminist Theory, ISSN 1464-7001, E-ISSN 1741-2773, Vol. 14, no 1, p. 105-121Article in journal (Refereed)
    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.

  • 10.
    Guntram, Lisa
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    "Differently normal" and "normally different": Negotiations of female embodiment in women's accounts of 'atypical sex' development2013In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 98, p. 232-238Article in journal (Refereed)
    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.

  • 11.
    Gustavsson, Erik
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    From Needs to Health Care Needs2014In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 22, no 1, p. 22-35Article in journal (Refereed)
    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.

  • 12.
    Gustavsson, Erik
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences. Högskolan i Borås, Institutionen för vårdvetenskap.
    Wiss, Johanna
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Rättviseteorier och prioriteringar2013In: Att välja rättvist: om prioriteringar i hälso- och sjukvården / [ed] Per Carlsson och Susanne Waldau, Lund: Studentlitteratur, 2013, 1, p. 49-64Chapter in book (Other academic)
    Abstract [sv]

    Hälso- och sjukvårdens resurser räcker inte till alla behov och önskemål från patienter och medborgare, vilket gör att personal och beslutsfattare hamnar i svåra situationer. Hur ska vi veta att det är rätt patienter som tvingas stå tillbaka? Att välja rättvist tar upp centrala begrepp och etiska principer kring prioriteringar. Boken beskriver även metoder för att göra prioriteringar på ett systematiskt sätt och erfarenheter av såväl nationella som internationella prioriteringar.

    Prioriteringsbeslut fattas på alla nivåer och kan gälla fördelning av resurser till olika verksamheter, behandlingsbeslut av enskilda patienter eller investeringar i nya medicinska metoder. Boken ger förslag på hur beslutsunderlagen kan förbättras. Här ges anvisningar om hur man mäter behov och nytta hos patientgrupper och i befolkningen, hur kostnadseffektivitet beräknas och hur man skapar ett kunskapsunderlag. På så sätt får läsaren inte bara ta del av prioriteringarnas teori utan även av deras praktik, inte minst genom konkreta exempel på hur öppna prioriteringar i dag tillämpas i svensk hälso- och sjukvård.

    Boken är avsedd för dig som arbetar kliniskt eller planerar att arbeta med prioriteringar – nationellt, i landsting eller i kommuner. Boken ger även en värdefull inblick för dig som vill lära mer om hur vårdens svåra val ska kunna hanteras i framtiden.

  • 13.
    Gustavsson, Erik
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences. Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Wiss, Johanna
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Multikriterieanalyser vid prioriteringar inom hälso- och sjukvården: kriterier och analysmetoder2013Report (Other academic)
    Abstract [en]

    The first part of this report draws attention to the vast amount of different criteria for policymakers to consider in priority setting decisions. There are several similarities between criteria that have been used in decision making in different countries and regions. However, it is interesting to highlight an important difference between the Swedish ethical platform and other countries and regions. The difference lies in the lexical ordering between the principles in the Swedish platform. This implies that one should take into account the principle of human dignity before the principle of need and solidarity and that the same relation should apply between the principle of need and solidarity and the principle of cost effectiveness. This strict hierarchy does not exist between principles in other countries. Similarities between different ethical platforms are especially found in relation to the principle of need or severity of the disease of which both play an important role in all countries and regions. Cost- effectiveness is another criterion that appears in all platforms that we have included in this report. Furthermore, it should be mentioned that the effect of an intervention plays an important role in all of the studies and reports that we have included. In several cases, there is a special focus on the prioritization of interventions with a proven efficacy. The above mentioned criteria are the most commonly present in reports on priority setting in health care but there are many other criteria which may be relevant to consider. It should also be noted that there are great similarities between the various reports on what should not constitute a basis for prioritization. For example, many countries and regions are reluctant to include chronological age as one criterion in their official reports.

    The second part of the report presents the methods of multi-criteria analysis; an umbrella term for various methods that uses a formalized process and ranks different alternatives on how they perform on a number of selected criteria. The different steps of a general multi-criteria analysis are presented: (1) identification of the object (2) construction of the model (3) evaluation of results and (4) the development of an action plan. A performance matrix, which is a standard tool for multi-criteria, is illustrated. In the next step, a selection of a number of various methods is presented, namely: direct analysis of the performance matrix, ordinal methods, the even swap-method, multi-attribute utility theory (MAUT), and the analytic hierarchy process (AHP). A number of applications of multi-criteria analysis have been performed in the area of health care decision making and the advantages and disadvantages of applying these methods in this area are highlighted.

  • 14.
    Görman, U
    et al.
    Lund University, Lund, Sweden.
    Nordström, K
    Jönköping University, Jönköping, Sweden.
    Ahlgren, J
    Lund University, Lund, Sweden.
    Grimaldi, K
    Eurogenetica Ltd, Burnham-on-Sea, UK .
    Mathers, J
    Newcastle University, Newcastle upon Tyne, UK.
    Perrudin, M
    Keller and Heckman LLP, Brussels, Belgium.
    Savigny, J
    Keller and Heckman LLP, Brussels, Belgium.
    Coff, C
    University College Zealand, Sorø,Denmark .
    Jönsson, H
    Lund University, Lund, Sweden.
    Juth, N
    Karolinska Institute, Stockholm, Sweden.
    Kjellström, S
    Jönköping University, Jönköping, Sweden.
    Meijboom, F
    Utrecht University, Utrecht, The Netherlands.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Nordgren, Anders
    Linköping University, Department of Culture and Communication, Centre for Applied Ethics. Linköping University, Faculty of Arts and Sciences.
    Rondeltap, A
    Wageningen University and Research Centre, Wageningen, The Netherlands.
    van Trijp, H
    Wageningen University and Research Centre, Wageningen, The Netherlands.
    Is it right? The ethical and legal implications of personalised nutrition2013In: Annals of Nutrition and Metabolism, ISSN 0250-6807, E-ISSN 1421-9697, Vol. 63, no 1, p. 3-4Article in journal (Refereed)
  • 15.
    Hjalmarsson Österholm, Johannes
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Samuelsson, Christina
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences.
    Orally positioning persons with dementia in assessment meetings2015In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 35, no 2, p. 367-388Article in journal (Refereed)
    Abstract [en]

    In this paper the authors study if and how persons with dementia are orally positioned by others, and how they position themselves while participating in assessment meetings held in order to discuss access to supportive services. We analysed five assessment meetings where two older persons (one diagnosed with dementia and one without a dementia diagnosis) participated to investigate whether the person with dementia is positioned differently than the other old person. Interactional phenomena used to position the person with dementia were identified by interactional analysis.

    The paperidentifies six phenomena that positioned the person with dementia as an individual with less interactional competence than the other participants: ignoring the person with dementia; voicing the feelings, capacity or opinion of the person with dementia; posing questions implying lack of competence; others' use of diagnosis; self-(re)positioning; and elderspeak. Persons with dementia are often orally positioned as less competent, indicating that they suffer further from discrimination than other older persons. We suggest that this has an impact on the participation of people with dementia in negotiations regarding their future care. The results indicate that social workers should be made aware that negative positioning exists and how it may affect the ability of people with dementia to contribute to discussions about their everyday life. Social workers should be encouraged to find strategies to reduce negative positioning in interaction.

  • 16.
    Hydén, Lars-Christer
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Bodies, embodiment and stories2013In: Doing Narrative Research / [ed] Molly Andrews, Corinne Squire, Maria Tamboukou, London: Sage Publications, 2013, 2, p. 126-141Chapter in book (Other academic)
    Abstract [en]

    Written by an international team of experts in the field, the second edition of this popular text considers both the theoretical underpinnings and practical applications of narrative research. The authors take the reader from initial decisions about forms of narrative research, through more complex issues of reflexivity, interpretation and the research context. Existing chapters have been updated to reflect changes in the literature and new chapters from eminent narrative scholars in Europe, Australia and the United States have been added on a variety of topics including narratives and embodiment, visual narratives, narratives and storyworlds, new media narratives and Deleuzian perspectives in narrative research. 

  • 17.
    Hydén, Lars-Christer
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Cutting Brussels sprouts: Collaboration involving persons with dementia2014In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 29, p. 115-123Article in journal (Refereed)
    Abstract [en]

    How people with dementia collaborate with other people is an area in need of more research and conceptualizations. Collaboration introduces a number of new possibilities and demands concerning cognitive and linguistic abilities and it is suggested that a theoretical framework that emphasize that cognitive resources are not exclusively individual, but are part of cognitive and communicative context. In this article focus is on joint activities and their collaborative organization is analyzed using an example involving persons with dementia working together with staff preparing a meal. The analysis shows that persons with dementia are able to collaborate in fairly advanced activities if they are supported in such a way that they can make use of the cognitive and linguistic resources of others, in particular cognitive functions having to do with planning and execution of actions. The organization of artifacts like kitchen tools can function as an external memory support. The results support a theoretical framework that help to understand what people can do together rather than focus on individual abilities. The results also indicate that is possible to learn how to organize collaboration involving persons with dementia by understanding how other persons abilities as well as artifacts can be used as external resources for support of cognitive and linguistic abilities. 

  • 18.
    Hydén, Lars-Christer
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    How to do things with others: joint activities involving persons with Alzheimer's disease2014In: Beyond loss: dementia, identity, personhood / [ed] Lars-Christer Hydén, Hilde Lindemann, Jens Brockmeier, New York: Oxford University Press, 2014, 1, p. 137-154Chapter in book (Refereed)
  • 19.
    Hydén, Lars-Christer
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Towards an Embodied Theory of Narrative and Storytelling2013In: The Travelling Concept of Narrative / [ed] Matti Hyvärinen, Mari Hatavara, Lars-Christer Hydén, Amsterdam: John Benjamins Publishing Company, 2013, 1, p. 227-244Chapter in book (Other academic)
    Abstract [en]

    Narrative is a pioneer concept in our trans-disciplinary age. For decades, it has been one of the most successful catchwords in literature, history, cultural studies, philosophy, and health studies. While the expansion of narrative studies has led to significant advances across a number of fields, the travels for the concept itself have been a somewhat more complex. Has the concept of narrative passed intact from literature to sociology, from structuralism to therapeutic practice or to the study of everyday storytelling? In this volume, philosophers, psychologists, literary theorists, sociolinguists, and sociologists use methodologically challenging test cases to scrutinize the types, transformations, and trajectories of the concept and theory of narrative. The book powerfully argues that narrative concepts are profoundly relevant in the understanding of life, experience, and literary texts. Nonetheless, it emphasizes the vast contextual differences and contradictions in the use of the concept

  • 20.
    Hydén, Lars-Christer
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Lindemann, HildeMichigan State University, USA.Brockmeier, JensThe American University in Paris, France.
    Beyond loss: dementia, identity, personhood2014Collection (editor) (Other academic)
    Abstract [en]
    • Focuses on what people with progressive dementias still have, largely because of their connections with others, is new and important.
    • Collects interdisciplinary essays by internationally established scholars
    • Provides new ways of understanding and dealing with dementia

    Coming to terms with dementia is one of the great challenges of our time. This volume of new interdisciplinary essays by internationally established scholars offers new ways of understanding and dealing with it. It explores views of dementia that go beyond the idea of loss, and rather envisions it as multilayered transformation and change of personhood and identity, and as development that mostly is socially shared with others. The studies collected here identify new empirical, theoretical, and methodological areas that will be crucial to future research and clinical practice concerned with age-related dementia. Three general themes are singled out as of particular importance and interest: persons and personhood, identity and agency, and the social and the communal.

    Readership: Students and researchers in: nursing, medicine, psychology, social work, gerontology, bioethics, memory research; people engaged in dementia organizations, caregivers, social workers.

  • 21.
    Hydén, Lars-Christer
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Nilsson, Elin
    Linköping University, Department of Social and Welfare Studies, Social Work. Linköping University, Faculty of Arts and Sciences.
    Couples with dementia: Positioning the ‘we’ 2015In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 14, no 6, p. 716-733Article in journal (Refereed)
    Abstract [en]

    The aim of this article is to investigate how spouses in couples with dementia position themselves in relation to each other by analysing their use of pronouns, especially the we. The study uses joint interviews with 11 couples. Based on a quantitative analysis of pronoun use, it is argued that the pronoun we is used by all the spouses; however, it is used less frequently by the spouses with dementia in comparison with healthy spouses. A qualitative analysis of the use of the pronoun we shows that the spouses position, experience and consider themselves as a couple and that they position and experience themselves as individuals in relation to the couple. One of the challenges for couples with dementia is to be able to retain a we in face of the progression of the dementia disease. By positioning themselves in various ways, the spouses establish and negotiate quite a complex and emotionally charged web of relationships. 

  • 22.
    Hydén, Lars-Christer
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Plejert, Charlotta
    Linköping University, Department of Culture and Communication, Language and Culture. Linköping University, Faculty of Arts and Sciences.
    Samuelsson, Christina
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuroscience. Linköping University, Faculty of Health Sciences.
    Örulv, Linda
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Feedback and common ground in conversational storytelling involvning people with Alzheimer's disease2012In: Journal of Interactional Research in Communication Disorders/Equinox, ISSN 2040-5111, E-ISSN 2040-512X, Vol. 4, no 2, p. 211-247Article in journal (Refereed)
    Abstract [en]

    The present article focuses on feedback in storytelling involving people with Alzheimer’s disease (AD), and how feedback is related to the ways participants establish a common ground (Clark 1996) in interaction. The establishment of common ground is important in all kinds of interaction and becomes an especially intricate process if participants have AD, since the achievement of common ground requires the ability to draw from knowledge and experiences relating to past as well as present events; an ability that is often hampered by the disease. Analyses show that other aspects than the actual content of the conversation are important for the participants – for instance being together, supporting the positive identities both presented in the story and embodied in the socially rewarding activity that they manage to engage in, implying that the participants create and sustain a common ground not so much about the story-layer as of the storytelling activity.

  • 23.
    Hyvärinen, Matty
    et al.
    Tampere University, Finland.
    Hatavara, MariTampere University, Finland.Hydén, Lars-ChristerLinköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    The Travelling Concepts of Narrative2013Collection (editor) (Other academic)
    Abstract [en]

    Narrative is a pioneer concept in our trans-disciplinary age. For decades, it has been one of the most successful catchwords in literature, history, cultural studies, philosophy, and health studies. While the expansion of narrative studies has led to significant advances across a number of fields, the travels for the concept itself have been a somewhat more complex. Has the concept of narrative passed intact from literature to sociology, from structuralism to therapeutic practice or to the study of everyday storytelling? In this volume, philosophers, psychologists, literary theorists, sociolinguists, and sociologists use methodologically challenging test cases to scrutinize the types, transformations, and trajectories of the concept and theory of narrative. The book powerfully argues that narrative concepts are profoundly relevant in the understanding of life, experience, and literary texts. Nonetheless, it emphasizes the vast contextual differences and contradictions in the use of the concept.

  • 24.
    Jaarsma, Pier
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Cultivation of empathy in individuals with high-functioning autism spectrum disorder2013In: Ethics and Education, ISSN 1744-9642, E-ISSN 1744-9650, Vol. 8, no 3, p. 290-300Article in journal (Refereed)
    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.

  • 25.
    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
  • 26.
    Jonasson, Lise-Lotte
    et al.
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Liss, Per-Erik
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Westerlind, Björn
    Geriatric Clinic , County Hospital Ryhov, Jönköping, Sweden.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Ethical values in caring encounters on a geriatric ward from the next of kin´s perspective: An interview study2010In: International Journal of Nursing Practice, ISSN 1322-7114, E-ISSN 1440-172X, Vol. 16, no 1, p. 20-26Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to identify and describe the governing ethical values that next of kin experience in interaction with nurses who care for elderly patients at a geriatric clinic. Interviews with fourteen next of kin were conducted and data were analysed by Constant comparative analysis. Four categories were identified: Receiving, showing respect, facilitating participation and showing professionalism. These categories formed the basis of the core category: “Being amenable”, a concept identified in the next of kin’s description of the ethical values that they and the elderly patients perceive in the caring encounter. Being amenable means that the nurses are guided by ethical values; taking into account the elderly patient and the next of kin. Nurses’ focusing on elderly patients’ well-being as a final criterion affects the next of kin and their experience of this fundamental condition for high quality care seems to be fulfilled.

  • 27.
    Lindqvist, Olav
    et al.
    Umeå University.
    H Rasmussen, Birgit
    Umeå University.
    Widmark, Anders
    Umeå University.
    Hydén, Lars-Christer
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Time and Bodily Changes in Advanced Prostate Cancer: Talk About Time As Death Approaches2008In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 36, no 6, p. 648-656Article in journal (Refereed)
    Abstract [en]

    The disease trajectory of living with incurable cancer is characterized by, increasing bodily deterioration and problems. In this paper, we have focused on the change in temporal awareness as manifested in the narrations of two men with hormone refractory prostate cancer and, skeletal metastases as they approach death. The two men participated in in-depth research interviews during the last part of their lives, sharing a similar disease trajectory with increaseing bodily change and decreasing physical function. Both died a lingering cancer,related death. The first and last research interviews were analyzed using a discourse analytic method. Findings show that the temporal awareness in the interviews changes as the illness progresses and death approaches. In the last interviews, the present is flooded with bodily problems; the past and the future are hardly present except for the future beyond the mens own deaths. Pain.,fatigue, nausea, and other symptoms figure largely in this change, and there is no time for much more than attending to bodily needs in a present that is dominated by problems. Here, the importance of alleviating bodily problems once again becames paramount, and two questions are raised: Is the often reported withdrawal from life, when death is imminent, a physical necessity rather than a psychological one, and is it possible to free time from, the time-consuming problems of the present by means of a more concentrated attempt, to alleviate these problems?

  • 28.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Reproductive choice, enhancement, and the moral continuum argument2014In: Journal of Medicine and Philosophy, ISSN 0360-5310, E-ISSN 1744-5019, Vol. 39, no 1, p. 41-54Article in journal (Refereed)
    Abstract [en]

    It is often argued that it does not matter morally whether biomedical interventions treat or prevent diseases or enhance nondisease traits; what matters is whether and how much they promote well-being. Therapy and enhancement both promote well-being, the argument goes, so they are not morally distinct but instead continuous. I provide three reasons why this argument should be rejected when it is applied to choices concerning the genetic makeup of future people. First, it rests on too simple a conception of the badness of disease. Second, it wrongly assumes that disease avoidance and enhancement can proceed with similar accuracy. Third, it overlooks that disease avoidance tends to be more urgent than enhancement from the point of view of distributive justice. Although none of these reasons establishes a firm therapy-enhancement distinction, they show that a continuum model is not an attractive alternative.

  • 29.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Avicenna2012In: Filosofi och medicin: från Platon till Foucault / [ed] Lennart Nordenfelt, Stockholm: Thales, 2012, p. 75-90Chapter in book (Other academic)
  • 30.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Canguilhem2012In: Filosofi och medicin: från Platon till Foucault / [ed] Lennart Nordenfelt, Stockholm: Thales, 2012, p. 199-216Chapter in book (Other academic)
  • 31.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Cicero2012In: Filosofi och medicin: från Platon till Foucault / [ed] Lennart Nordenfelt, Stockholm: Thales, 2012, p. 39-54Chapter in book (Other academic)
  • 32.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Cullen och sjukdomsklassifikationernas utveckling2012In: Filosofi och medicin: från Platon till Foucault / [ed] Lennart Nordenfelt, Stockholm: Thales, 2012, p. 109-134Chapter in book (Other academic)
  • 33.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Editorial Material: Ill Health or Illness: A Reply to Hofmann2013In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 21, no 4, p. 298-305Article in journal (Other academic)
    Abstract [en]

    In this article I respond to Bjorn Hofmanns criticism of some elements in my theory of health. Hofmanns main objective is to question "Nordenfelts basic premise that you can be ill without having negative first-person experiences, and to investigate the consequences of abandoning the premise." One of Hofmanns critical points is that my theory of health does not lend voice to the individual. My response is essentially conducted in four steps: (1) I question the aim of conceptual analysis that Hofmann proposes for the analysis of the notion of health. (2) I maintain that my analysis, in spite of Hofmanns contention, lends voice to the individual. It does so via my notion of subjective illness but also via my notion of vital goal. (3) I argue that conditions, such as coma, paralysis and mania are salient instances of ill health and that these may become neglected if the use of the terms "ill" and "illness" is restricted to instances where negative subjective experiences are present. (4) I rehearse my main arguments for selecting disability as the core element of ill health and respond to Hofmanns contention that persons who are in great pain can sometimes nevertheless perform perfectly.

  • 34.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Fleck och den polska skolan2012In: Filosofi och medicin: från Platon till Foucault / [ed] Lennart Nordenfelt, Stockholm: Thales, 2012, p. 163-182Chapter in book (Other academic)
  • 35.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Galenos2012In: Filosofi och medicin: från Platon till Foucault / [ed] Lennart Nordenfelt, Stockholm: Thales, 2012, p. 55-74Chapter in book (Other academic)
  • 36.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Om medicinens filosofi2012In: Filosofi och medicin: från Platon till Foucault / [ed] Lennart Nordenfelt, Stockholm: Thales, 2012, p. 7-15Chapter in book (Other academic)
  • 37.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    On the notion of health as ability2014In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 21, p. 48-52Article in journal (Refereed)
    Abstract [en]

    In this paper an outline of a theory of health based on the notion of ability is presented. A persons health is defined as his or her second-order ability to realize vital goals given standard or otherwise reasonable circumstances. The crucial concepts: vital goal, standard circumstance and second-order ability, are characterized in the paper. Special emphasis is laid upon the third concept, second-order ability, which is of particular importance for the theory of rehabilitation.

  • 38.
    Nordstrom, Karin
    et al.
    Jonköping University, Sweden .
    Coff, Christian
    University of Coll Zealand, Denmark .
    Jonsson, Hakan
    Lund University, Sweden .
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Gorman, Ulf
    Jonköping University, Sweden .
    Food and health: individual, cultural, or scientific matters?2013In: Genes & Nutrition, ISSN 1555-8932, E-ISSN 1865-3499, Vol. 8, no 4, p. 357-363Article, review/survey (Refereed)
    Abstract [en]

    In personalized nutrition, food is a tool for good health, implying an instrumental relationship between food and health. Food receives a secondary value, while health would appear to be a descriptive biological concept. This article gives an introduction to cultural understandings of food and health. The wider definition of food and health is explored in relation to the commonly used scientific approach that tends to take a more reductionist approach to food and health. The different discourses on food and health are being discussed in relation to ethical aspects of personalized nutrition. The success of personalized nutrition is likely dependent upon the ability to integrate the scientific approach with everyday cultural, emotional, ethical, and sensual understandings of food. Health theories can be divided into two principal rival types-biostatistical and holistic. Biostatistical focuses on survival, while holistic focuses on ability as a precondition for health. Arguments in favor of a holistic and individualistic theory of health and illness are presented. This implies a focus on the ability of the individual to realize his or her "vital goals." A holistic and individualistic health concept may have a reinforcing effect on the individualized approach in personalized nutrition. It allows focus on individual health premises and related dietary means of health promotion, as well as an individualized perspective on the objectives of health promotion. An individualistic notion of health also indicates that people with high levels of vital goals benefit more easily. To reach beyond these groups is likely difficult. This potential injustice should be balanced with global preventive medical programs.

  • 39.
    Nygren, Maria
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences.
    Ludvigsson, Johnny
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Carstensen, John
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Sepa Frostell, Anneli
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences. Linköping University, Department of Behavioural Sciences and Learning, Cognition, Development and Disability. Linköping University, Faculty of Arts and Sciences.
    Family psychological stress early in life and development of type 1 diabetes: The ABIS prospective study2013In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 100, no 2, p. 257-264Article in journal (Refereed)
    Abstract [en]

    Aims: This study investigated whether psychological stress in the family during the childs first year of life are associated with the risk of childhood type 1 diabetes (T1D). According to the beta-cell stress hypothesis all factors that increase the need for, or the resistance to, insulin may be regarded as risk factors for T1D. less thanbrgreater than less thanbrgreater thanMethods: Among 8921 children from the general population with questionnaire data from one parent at childs birth and at 1 year of age, 42 cases of T1D were identified up to 11-13 years of age. Additionally 15 cases with multiple diabetes-related autoantibodies were detected in a sub-sample of 2649 children. less thanbrgreater than less thanbrgreater thanResults: Cox regression analyses showed no significant associations between serious life events (hazard ratio 0.7 for yes vs. no [95% CI 0.2-1.9], p = 0.47), parenting stress (0.9 per scale score [0.5-1.7], p = 0.79), or parental dissatisfaction (0.6 per scale score [0.3-1.2], p = 0.13) during the first year of life and later diagnosis of T1D, after controlling for socioeconomic, demographic, and diabetes-related factors. Inclusion of children with multiple autoantibodies did not alter the results. less thanbrgreater than less thanbrgreater thanConclusions: No association between psychological stress early in life and development of T1D could be confirmed.

  • 40.
    Omar, Faisal
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Tinghög, Gustav
    Linköping University, Department of Management and Engineering, Economics. Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Carlsson, Per
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Welin, Stellan
    Linköping University, Department of Culture and Communication, Arts and Humanities. Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Risk för orättvis prioritering av patienter vid njurtransplantation: En enda väntelista bör införas, visar studie av svensk praxis2014In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 111, no 37Article in journal (Refereed)
    Abstract [en]

    In order to investigate the fairness of the priority setting process underpinning Swedish kidney transplantation in reference to the Accountability for Reasonableness (A4R) framework, 15 interviews with transplant surgeons, nephrologists, and coordinators were carried out. The factors described by interviewees and the values they rest on satisfy the relevance criterion of the A4R. Two potential sources for unfair inequalities were identified, namely the use of clinical judge­ments and varying institutional policies among dif­ferent centres. It is recommended that factors and values used in the priority process are made more public. Sweden should also consider a national, centralised system for allocation of kidneys and not rely on present day local allocation.

  • 41.
    Rasmark, Gorel
    et al.
    Kalmar County Council, Sweden .
    Richt, Bengt
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Edvard Rudebeck, Carl
    Kalmar County Council, Sweden University of Tromso, Norway .
    Touch and relate: body experience among staff in habilitation services2014In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 9, no 21901Article in journal (Refereed)
    Abstract [en]

    In habilitation centres staff meet children with different impairments, children who need extensive support and training while growing up. A prevailing biomedical view of the body in habilitation services is gradually becoming supplemented by a perspective on the body as constantly involved in experiencing and communicating, the latter involving also the bodies of the therapists. Investigating body experience in habilitation staff in their encounters with the children may provide concepts that make it easier to reflect on what is going on in the interaction. When shared among larger number of peers and supported by further research in the field, reflected body experience may become a substantial aspect of professional self-knowledge. Our aim with this study was to contribute to the understanding of what it means to be a body for other bodies in the specific relational context of child habilitation, and more specifically to investigate what role the therapists body experience may play for professional awareness and practice. In the study, five physiotherapists and three special-education teachers spoke of physical and emotional closeness (the body as affection) but also of a provoking closeness (the body as provoked) with the children and of how their own body experience made them more attentive to the childrens experience (the body as reference). Situations that included bodily limitations (the body as restriction) were described, as were situations where the body came into focus through the gazes of others or ones own (the body as observed). The body was described as a flexible tool (the body as tool), and hands were given an exclusive position as a body part that was constantly communicating. Three shifts of intentionality that form a comprehensive structure for this body experience were discerned. When professional reflection is evoked it may further body awareness, deepen reflection in practice and strengthen intercorporeality.

  • 42.
    Samuelsson, Ulf
    et al.
    Linköping University, Department of Molecular and Clinical Medicine, Pediatrics. Linköping University, Faculty of Health Sciences.
    Carstensen, John
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Löfman, Owe
    Östergötlands Läns Landsting, Centre for Public Health Sciences, Centre for Public Health Sciences. Linköping University, Faculty of Health Sciences.
    Nordfeldt, Sam
    Linköping University, Department of Molecular and Clinical Medicine, Child and Adolescent Psychiatry. Linköping University, Faculty of Health Sciences.
    Seasonal variation in the diagnosis of type 1 diabetes in south-east Sweden2007In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 76, no 1, p. 75-81Article in journal (Refereed)
    Abstract [en]

    With the aim to survey the seasonal pattern of diagnosis of type 1 diabetes we included all 1903 children <16 years of age and who had been diagnosed with type 1 diabetes between 1977 and 2001 in the south-east of Sweden. To investigate the seasonal pattern a mixture of two cosine functions was included in a logistic regression model.

    There was a clear seasonal variation over the years (p < 0.001). Children in the oldest age group (11–15 years) showed the most obvious seasonal variation (p < 0.001). Children with a short duration of symptoms had about the same seasonal variation as children with a long duration. Both children with and without an infection 3 months prior to diagnosis showed significant seasonal variation (p < 0.001) although the seasonal pattern differed between the two groups (p < 0.001). As the incidence of diabetes increased during the 25 years the study period was divided into periods of 5 years and it was only during the two last periods that significant seasonal variation occurred.

    There is a clear seasonal variation in diagnosis of type 1 diagnosis in children and the results suggest that children with a less aggressive disease process at diagnosis were most responsible for this variation. Children with and without prior infection showed a different seasonal pattern.

  • 43.
    Sandman, Lars
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Broqvist, Mari
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Gustavsson, Erik
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Arvidsson, Eva
    Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Health Sciences.
    Ekerstad, Niklas
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Carlsson, Per
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Vård som inte kan anstå: Tolkning i relation till den etiska plattformen och nationella modellen för öppna prioriteringar2014Report (Other academic)
    Abstract [en]

    Method

    The assignment from the National Board of Health and Welfare consists of three related parts. Part one presents different interpretations of the concept “care that cannot be deferred” based on an analysis of how the concept is used in the government bill and the wording of the Act. Several criteria are used to specify these interpretations. Part two analyses the interpretations of the concept “care that cannot be deferred” discussed in part one. The analysis is based on the ethics platform for priority setting. Part three aims to analyse how the concept “care that cannot be deferred” relates to the National Model for Transparent Prioritisation in Swedish Health Care and discuss whether it can be used to support prioritisation and rationing. The theoretical analysis is complemented by several examples of practical decision-making situations, as described by clinicians, that involve the care of non-registered individuals.

    Analysis

    In this report we have formulated several criteria that the concept “care that cannot be deferred” must fulfil according to the law (2012/13:407).

    These criteria address: Care need: The individual has a care need – i.e. a discrepancy exists between the desired and actual condition, which can be influenced by a care intervention.

    Limitations: The provider may place limitations on “care that cannot be deferred” delivered to non-registered individuals in Sweden and who are 18 years of age or older. Such limitations should be based on considerations involving:

    • Severity of the condition (current ill health, risk for future ill health, or special needs arising from previous assault and trauma).
    • Effect of the intervention if it is provided now compared to deferred intervention.
    • Cost-effectiveness of the intervention if it is provided now compared to deferred intervention.

    Limited responsibility: When applying the concept “care that cannot be deferred” the provider should assume that the individual is expected to be in Sweden for a limited time, but it is not necessary to consider the person’s opportunities to receive care once he/she is no longer in Sweden.

    Expanded responsibility: When applying the concept “care that cannot be deferred” the provider should assume that the individual is expected to be in Sweden a limited time, but should also consider the person’s opportunities to receive care once he/she is no longer in Sweden.

    Conclusions

    Based on the care need criterion, we conclude that non-registered individuals who seek care should be adequately evaluated in each case so the provider can determine whether a care need exists.

    We conclude that the limited responsibility criterion conflicts with the human dignity principle when it comes to limiting care based on chronological age and national registration. Further we conclude that the rationing of care implied by the limited responsibility criterion does not appear to be based on limited resources, but that the non-registered individual does not have the same right to health services as the nationally registered population does.

    We conclude that in choosing between the limited and the expanded responsibility criteria, the latter is preferable in light of the ethical platform since, to a greater extent, the expanded responsibility criterion allows consideration of relevant aspects (e.g. severity level, effect of intervention, and cost effectiveness) similar to the way the registered population is treated. Further, we conclude that the time limitation of the responsibility criteria is difficult to address since in many cases it is highly uncertain how long a person can remain in Sweden without necessary authorisation.

    We conclude that the factors presented for determining how to define “care that cannot be deferred” are basically the same as those in the national model for priority setting – i.e. severity of the condition (current and potential), effect of the intervention (and how it changes over time), and cost effectiveness. Concurrently we point to several contradictions in defining the definition, and in the law generally, that conflict with the ethical platform and the national model for priority setting. This includes the cases where specific diagnostic or treatment areas are explicitly noted, regardless of severity level, effect of intervention, or cost effectiveness.

    Further, we conclude that it is possible to point to several general combinations of severity level, effect of intervention, and cost effectiveness that can define “care that cannot be deferred” – so these combinations are very difficult to apply at the individual level. The reason is that it is difficult to determine individual risks and effects. As regards the registered population, a normal way to determine risks or effects would be either to provide treatment “for safety’s sake” or to wait, thus providing the opportunity for the patient to return if the  condition deteriorates or for the provider to call the patient for a return visit. If the provider decides that care can be deferred, usually there is an opportunity for a new evaluation at the initiative of the patient or provider. Since it is less certain that patients in the non-registered population can return for a new evaluation, it might seem reasonable to offer treatment more often for safety’s sake. Concurrently, this must be balanced against the risks associated with treatment and the opportunities to follow up on these risks wherever the individual resides.

  • 44.
    Tegern, Gunilla
    et al.
    Linköping University, Department of Thematic Studies, Department of Child Studies. Linköping University, Faculty of Arts and Sciences.
    Tinghög, Petter
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Flodmark, Olof
    Institutionen för klinisk neurovetenskap, Karolinska institutet, Stockholm.
    Om att förebygga skakvåld mot små barn: redovisning och utvärdering av en försöksverksamhet med ett preventionsprogram2012Report (Other academic)
    Abstract [sv]

    År 2008 fick professorn och verksamhetschefen vid Neuroradiologiska Kliniken vid Karolinska Universitetssjukhuset, i uppdrag av Socialdepartementet och Stockholm läns landsting att tillsammans med verksamhetsföreträdare för mödra- och barnhälsovård i Stockholms läns landsting utveckla en modell för prevention av barnmisshandel i form av skakvåld och därpå följande hjärnskador efter en utprövad amerikansk förebild samt påbörja en försöksverksamhet inom landstinget. Redan under planeringsfasen fattades beslutet att utvärdera försöksverksamheten.

    Den här rapporten avser att redovisa de erfarenheter som projektet gett upphov till. Vår förhoppning är att vi på så sätt kan förse organisationer och verksamheter som överväger att införa prevention av skakvåld i den reguljära vården med ett diskussions-/beslutsunderlag. Rapporten är indelad i ett antal mer eller mindre självständiga kapitel. Beroende på bakgrund och intresse kan läsaren välja att fokusera på ett enda kapitel eller ta del av flera.

    Vi har valt att redovisa sammanfattningen av rapporten och konklusionerna i det första kapitlet. För den som har begränsad tid och mindre nytta av detaljer skall denna sammanfattning förhoppningsvis vara tillräcklig för att få en god bild av programverksamhetens styrkor och svagheter. För den läsare som inte redan är förtrogen med forskning om hjärnskador och våld riktad mot små barn och med internationella försök att förebygga detta har vi gjort en kortfattad sammanställning av kunskapsläget i kapitel 2 samt en genomgång av hur ett antal internationella preventionsprogram utformats och utvärderats. I kapitel 3 beskrivs sedan det svenska preventionsprogrammet, Mental vaccination, som utarbetades inom projektet och som prövades i Stockholms läns landsting under försöksperioden. I kapitel 4 redovisas utvärderingen av programverksamhetens inledande fas, förberedelse och implementering, sedd från den berörda personalens perspektiv. Det sista kapitlet (kapitel 5) redovisar utvärderingen av programmets effekter på nyblivna föräldrars attityder, kunskap, medvetenhet om risker samt riskreducerande beteende.

    Ansvariga för denna rapport vill tacka personal och föräldrar som bidragit med att besvara de enkäter som legat till grund för denna rapport. Vi vill också tacka de medarbetare som utbildat, stött och uppmuntrat informatörerna samt de läkare och verksamhetsansvariga som deltagit i projektets styr- och projektgrupper.

  • 45.
    Timpka, Toomas
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Health and Developmental Care, Center for Public Health.
    Jacobsson, Jenny
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Health Sciences.
    Bickenbach, Jerome
    Queens University, Kingston, ON, Canada .
    Finch, Caroline F.
    Federation University Australia, Ballarat.
    Ekberg, Joakim
    University of Skövde, Sweden .
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    What is a Sports Injury?2014In: Sports Medicine, ISSN 0112-1642, E-ISSN 1179-2035, Vol. 44, no 4, p. 423-428Article in journal (Refereed)
    Abstract [en]

    Current sports injury reporting systems lack a common conceptual basis. We propose a conceptual foundation as a basis for the recording of health problems associated with participation in sports, based on the notion of impairment used by the World Health Organization. We provide definitions of sports impairment concepts to represent the perspectives of health services, the participants in sports and physical exercise themselves, and sports institutions. For each perspective, the duration of the causative event is used as the norm for separating concepts into those denoting impairment conditions sustained instantly and those developing gradually over time. Regarding sports impairment sustained in isolated events, sports injury denotes the loss of bodily function or structure that is the object of observations in clinical examinations; sports trauma is defined as an immediate sensation of pain, discomfort or loss of functioning that is the object of athlete self-evaluations; and sports incapacity is the sidelining of an athlete because of a health evaluation made by a legitimate sports authority that is the object of time loss observations. Correspondingly, sports impairment caused by excessive bouts of physical exercise is denoted as sports disease (overuse syndrome) when observed by health service professionals during clinical examinations, sports illness when observed by the athlete in self-evaluations, and sports sickness when recorded as time loss from sports participation by a sports body representative. We propose a concerted development effort in this area that takes advantage of concurrent ontology management resources and involves the international sporting community in building terminology systems that have broad relevance.

  • 46.
    Tinghög, Petter
    et al.
    Karolinska Institutet, Stockholm, Sweden.
    Björkenstam, Charlotte
    Karolinska Institutet, Stockholm, Sweden.
    Carstensen, John
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Jansson, Catarina
    Karolinska Institutet, Stockholm, Sweden.
    Glaser, Anna
    Karolinska Institutet, Stockholm, Sweden.
    Hillert, Jan
    Karolinska Institutet, Stockholm, Sweden.
    Alexanderson, Kristina
    Karolinska Institutet, Stockholm, Sweden.
    Co-morbidities increase the risk of disability pension among MS patients: a population-based nationwide cohort study2014In: BMC Neurology, ISSN 1471-2377, E-ISSN 1471-2377, Vol. 14, no 117Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Multiple sclerosis (MS) is a chronic and often disabling disease. In 2005, 62% of the MS patients in Sweden aged 16-65 years were on disability pension. The objective of this study is to investigate whether the presence of common co-morbidities increase MS patients' risk for disability pension.

    METHODS:

    This population-based cohort study included 4 519 MS patients and 4 972 174 non-MS patients who in 2005 were aged 17-64 years, lived in Sweden, and were not on disability pension. Patients with MS were identified in the nationwide in- and outpatient registers, while four different registers were used to construct three sets of measures of musculoskeletal, mental, and cardiovascular disorders. Time-dependent proportional hazard models with a five-year follow up were performed, adjusting for socio-demographic factors.

    RESULTS:

    All studied disorders were elevated among MS patients, regardless of type of measure used. MS patients with mental disorders had a higher risk for disability pension than MS patients with no such co-morbidities. Moreover, mental disorders had a synergistic influence on MS patients' risk for disability pension. These findings were also confirmed when conducting sensitivity analyses. Musculoskeletal disorders appeared to increase MS patients' risk for disability pension. The results with regard to musculoskeletal disorders' synergistic influence on disability pension were however inconclusive. Cardiovascular co-morbidity had no significant influence on MS-patients' risk for disability pension.

    CONCLUSIONS:

    Co-morbidities, especially mental disorders, significantly contribute to MS patients' risk of disability pension, a finding of relevance for MS management and treatment.

  • 47.
    Van Parys, Hanna
    et al.
    Psychology and Educational Sciences, Ghent University, Belgium.
    Provoost, Veerle
    Bioethics Institute Ghent, Ghent University, Belgium.
    Zeiler, Kristin
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Medicine and Health Sciences.
    De Sutter, Petra
    Ghent University Hospital, Ghent, Belgium.
    Pennings, Guido
    Bioethics Institute Ghent, Ghent University, Belgium.
    Buysse, Ann
    Psychology and Educational Sciences, Ghent University, Belgium.
    Constructing and enacting kinship in sister-to-sister egg donation families: a multi-family member interview study2017In: Sociology of Health and Illness, ISSN 0141-9889, E-ISSN 1467-9566, Vol. 39, no 6, p. 847-862Article in journal (Refereed)
    Abstract [en]

    Although intra-familial egg donation has been practiced for more than 15 years in several countries, little is known about family relationships in this family type. Framed within the new kinship studies, this article focuses on the experiential dimension of kinship in sister-to-sister egg donation families: how is kinship unpacked and reconstructed in this specific family constellation? Qualitative data analysis of interviews with receiving parents, their donating sisters and the donor children revealed six themes: (1) being connected as an extended family; (2)disambiguating motherhood; (3) giving and receiving as structuring processes; (4) acknowledging and managing the special link between donor and child; (5)making sense of the union between father and donor; and (6) kinship constructions being challenged. This study showed the complex and continuous balancing of meanings related to the mother-child dyad, the donor-child dyad and the donor-father dyad. What stood out was the complexity of, on the one hand cherishing the genetic link with the child allowed by the sisters egg donation, while, on the other, managing the meanings related to this link, by, for instance, acknowledging, downsizing, symbolising, and differentiating it from the mother-child bond. (A Virtual Abstract of this paper can be accessed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA))

  • 48.
    Veetnisha Gunnarsson, Nina
    et al.
    Jönköping University, Sweden.
    Hemmingsson, Helena
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Hydén, Lars-Christer
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Borell, Lena
    Karolinska Institutet, Stockholm, Sweden.
    Managing Family Relations and Controlling Information While Supporting an Allergic Child2013In: Qualitative Sociology Review, ISSN 1733-8077, E-ISSN 1733-8077, Vol. 9, no 3, p. 205-219Article in journal (Refereed)
    Abstract [en]

    This paper explores parental (particularly mothers’) support in the daily lives of children with allergies in a Swedish context. An ordinary life is established by making comparisons to what other children without allergies presumably can do (and eat). Although the parents’ goal is to support their child in managing allergies, neither their practical nor their interactional strategies work in a clear-cut direction to promote the child’s ordinary life and identity. On the contrary, parents’ accounts convey that they function just as much against an everyday life and the child’s identity. When managing family relations, parents expect immediate family members (specifically grandparents)to understand and accommodate the child’s needs.

    However, claims of family responsibility are made through moral tales about lack of support from “generalized others.” Family responsibility is also downplayed in parents’ accounts as demands of support may put parents’ moral self at risk. The strategy of information control in certain situations and (non-family) relations used to keep the child safe may risk stigmatizing the child, alternatively, making the child into a social threat. One of the conclusions that could be drawn from this study is that claims of family support may be contradictory to other cultural principles that ascribe responsibilities between families and individuals, as the principles of individual freedom and autonomy.

  • 49.
    Welin, Stellan
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Värde mot värde i vården: värdebaserad vård: är vi så bra vi kan bli?2014In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 111, no 22Article, book review (Other academic)
  • 50.
    Welin, Stellan
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Persson, Anders
    Tema teknik och social förändring Tema.
    Hemlin, Sven
    Humsam Göteborgs universitet.
    Lönsamt utbyte? Embryonala stamceller i gränslandet mellan klinik, universitet och marknad2007In: Att forma vår framtid. Bioteknikens möjligheter och problem / [ed] Göran Hermerén,Carl-Gustaf Andrén, Lund: Nordic Academic Press , 2007, p. 220-234Chapter in book (Other academic)
    Abstract [sv]

    Människans livsvillkor har förändrats dramatiskt genom historien i takt med att tekniken utvecklats. Ny kunskap ger nya möjligheter. Föräsndringen kommer med all säkerhet att fortsätta. Men hur?År 2003 förklarade The International Human Gemone Organisation att arbetet med att kartlägga människans arvsmassa hade förverkligats snabbare än förväntat. Därmed öppnades möjligheter att än en gång förändra människans livsvillkor, och på ett mera grundläggande sätt än tidigare. Nu kan vi inte bara förändra vår omgivning utan dessutom med genteknik och nanoteknik påverka vad en människa är. Den möjligheten är en etisk utmaning.Vad betyder riskbedömningar, etik, livsåskådningar och kulturella föreställningar när vi väljer hur den nya tekniken ska användas? Att forma vår framtid belyser dagens arbete med stamcellsforskning och nanoteknik. Texterna diskuterar frågor som hantering av genetisk information, kommersialisering och postgenom forskning i ett globalt perspektiv.

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