INTRODUCTION: At times of parental cancer, children's health and well-being are at risk, which is why interventions to support these children have been developed. When developing such interventions, engagement of the population under study in research is endorsed to enhance relevance of research questions and to enhance uptake and dissemination of the findings. Since no previous review has mapped the ways children participate in the development, use and evaluation of these support interventions, the focus of the upcoming scoping review is to identify gaps in the literature for guidance of future research.

METHODS AND ANALYSIS: The scoping review is guided by the methodological framework developed by Arksey and O'Malley. A preliminary search strategy was performed in PubMed in November 2020, refined in March 2021 and applied in PubMed, PsycINFO and CINAHL. Additional searches were performed in Google Scholar and SwePub, and reference lists were hand searched. Refined searches will be conducted in February 2024. The multidisciplinary research team will independently screen titles, abstracts and full-text articles for relevance. Then, relevant studies will be critically evaluated using the Joanna Briggs Critical Appraisal Skills Tools. Data will be extracted using an extraction form and analysed deductively. A descriptive summary of study characteristics and the research process will be presented, including a flow chart. The reporting of the study will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews Checklist.

ETHICS AND DISSEMINATION: Being a secondary analysis, ethical approval is not needed. Still, relevant studies will be reviewed for ethical approval as a criterion for inclusion. The findings will be used to inform future studies and will be published in a scientific journal as well as presented at conferences and organisations for children's rights.

In this paper presentation we argue that the international disability movement makes visible that modern medical prevention may need to be understood based on the term community. Through the term, it is assumed that there is a culture within the disability movement that creates not only community, but also a strong self-identity linked to biological facts. Within some groups, this self-identity is very strong and not infrequently the self-identity can be linked to a pride in who one is and to which group one belongs. Based on this community, the phenomenon of medical prevention needs to be problematized when modern biotechnologies are introduced into healthcare.

A desire for increased prevention in society not only creates a desire to, for example, screen to detect genetic changes at the fetal stage, but can also lead to expectant parents terminating the pregnancy. When fewer and fewer children are born with a disability, there is also the risk that the group becomes impoverished and the community dissolves. The members simply become fewer. The disability movement sometimes sees this as a struggle and that one should not betray one's community.

We therefore will argue that community is an important starting point for understanding and problematizing the many, and difficult, approaches that exist in relation to today's modern biomedical technologies. It is easy to focus solely on the pregnant woman's right to choose in this complex discussion and not bring in or discuss other perspectives. Based on the question, Shakespeare has, for example, pointed out that a change in society's attitudes to disability could be more effective than using modern biotechnology. In our paper, we wish to examine the concept of community in more detail and, based on the concept, make a reading of how this discussion is conducted internationally within the disability movement.

In this presentation I will present data from focus group interviews with professionals within social work and how the talk about knowledge in relation to digitalization. In today’s social work knowledge circulation has become increasingly important. The work must be conducted with evidence-based knowledge, complex problems require new knowledge and so on. Knowledge circulation could be seen as a buzzword for modern social work. In the interviews, digital technologies are the solution for many social workers to get new knowledge, but also circulate it in the organization. At the same time technology also add new problems and limitations. One problem is the amount of data. Most social workers feel that the get to much information through e-mail.How can this form of knowledge circulation be analyzed with an STS perspective? And how can the mundane working life for the social worker be used to develop the STS perspective? I will in this presentation use Manuel Delanda´s perspectives on assemblage theory. I am particularly interested in how assemblages are composed of “heterogeneous components”; like persons, machines, buildings and so on, and how these components are part of larger assemblage. We are here “dealing with assemblages of assemblages” (Delanda 2016: 129), which can say something about the territorialization of social work in times of digitalization. This is a theoretical perspective that can further develop how we understand the role of technology in social work.

I kapitlet presenteras kunskapsanvändning bland socialarbetare i samordnande, utvecklande och utredande klientarbete inom vård- och omsorgsområdet. Fokus är arbetet med funktionsstöd och äldreomsorg och hur de arbetar med kunskap, brukarnära och praktiskt. I arbetet ska de ta in och processa information och kunskap i olika former, för att sen förmedla ut det till brukare och brukarnära personal. De översköljs ofta av information, samtidigt som de måste förhålla sig till olika kunskapshierarkier inom och utanför kommunen.

This study focuses on how women’s shelters in Sweden came to use digital platforms to reshape their social work during the Covid-19 pandemic. Through short telephone interviews with 14 managers of women’s shelters on several occasions during 2020 and 2021, this study highlights how their extended use of digital platforms left them with both possibilities and thresholds in their work to reach and stay in contact with abused women and children. Women’s shelters made use of both mobile and wireless platforms (such as text messages in mobile phones) and web-based platforms (such as chat groups on the Internet). The results of the study are presented in four different themes. The first theme concerns how women and youth came into contact with the women’s shelters and what platforms they used. The next theme focuses on how the digital contact was created and maintained. An important finding is that the number of contacts from young people increased, while the overall number of adult women decreased. The third theme highlights those thresholds that risk creating weak networks between the women making contact and the women’s shelters. This is also discussed in relation to the last theme, which focuses on the women’s shelters’ work with the platforms. An important result is that the digital platforms made it possible for women to come into contact with the women’s shelters during the Covid-19-pandemic; nevertheless, there are also thresholds that need to be made visible.

The development of replacing human organs with those from genetically modified pigs holds immense potential for alleviating the shortage of organs necessary for patients in need of transplants. This medical advancement is also accompanied by significant social changes, including the emergence of a bioeconomy, new modes of biotechnology governance, altered human-animal relations and increased public engagement. Some aspects, such as the impact on the transplant allocation system, effects on clinical practice and healthcare provision, global trajectories and most importantly the consequences for patients and their families remain unpredictable. Given that xenotransplantation occurs within a societal context and its success or failure will not be confined to technical feasibility alone, it is essential to engage a social sciences perspective to highlight the social implications and emphasise the importance of social research in accompanying future developments.

Introduktion

Den digitaliseringsvåg som de senaste åren svept genom samhället har på många sätt varit extra märkbar inom kollektivtrafiken. För den individ som reser kollektivt har det inneburit att det vuxit fram nya rutiner och förhållningsätt i resandet. Många av de nya praktikerna i resandet är kopplade till mobiltelefonen, men också på en mängd andra områden sker en automatisering. Relationen mellan människa och maskin har förändrats från grunden. För att möjliggöra att alla människor i samhället kan känna sig delaktiga i denna utveckling behöver vi bättre förstå denna relation. I detta paper gör jag ett försök att genom ett kulturteoretiskt perspektiv förstå vilka relationer den nya teknologin frammanar och möjliggör i kollektivtrafiken.

Metod

Undersökningen bygger på data som samlats in i ett forskningsprojekt med fokus på vilka hinder och begränsningar som finns i kollektivtrafiken för personer med funktionsnedsättning. Cirka 15 personer har intervjuats om deras användning av kollektivtrafik och vilka möjligheter och begränsningar de möter i sin vardag. Cirka 5 personer av dessa 15 personer har också observerats när de använt kollektivtrafik i form av tåg och buss. Som ett komplement till denna undersökning har också en översikt gjorts kring vilka olika digitala lösningar som idag används i kollektivtrafiken och vilka lösningar som inom en snar framtid kan komma att implementeras. Projektet genomförs inom K2, Nationellt kunskapscenter för kollektivtrafik.

Resultat

I artikeln ”The digital society comes sneaking in: An emerging field and its disabling barriers” (Egard & Hansson, 2023) har några av våra resultat kring studien presenterats. Ett återkommande tema i artikeln är att den digitala förändringen smyger sig in i en mängd olika områden i samhället och samtidigt skapar nya rutiner för resenärerna. För en del resenärer med funktionsnedsättning innebär teknologin nya möjligheter, medan det för andra kan uppstå begräsningar som försvårar resandet. Genom att rikta den analytiska blicken mot de erfarenheter som personer med funktionsnedsättning har kan en bättre förståelse för teknologin skapas. 

Slutsats

Relationen mellan människa och maskin är ett återkommande tema inom den kulturteoretiska forskningen, men också ett centralt tema för att skapa en förståelse för hur digitaliseringen förändrar vår värld. Genom att lyssna på de erfarenheter som personer med funktionsnedsättningar har av denna förändring är det möjligt att generera nya perspektiv på hur denna relation kan förstås. Erfarenheterna kan helt enkelt tydliggöra det assemblage av relationer som möjliggör det kollektiva resandet, men också vilka begräsningar som finns för många (Hansson, 2022).

Referenser

Egard, H., & Hansson, K. (2023). The digital society comes sneaking in: An emerging field and its disabling barriers. Disability & Society, 38(5), 761–775. https://doi.org/10.1080/09687599.2021.1960275

Hansson, K. (2022). Disabled infrastructure: an urban photo essay. Urban Matters, (Just mobility, transport and urban infrastructures). Retrieved from https://urbanmattersjournal.com/disabled-infrastructure-an-urban-photo-essay/

Knowledge has become a key word in social work and a central catalyst for change when it comes to social justice. Not least in a society that is increasingly divergent and in need of handling different crises. Through knowledge there is an ability for creating spaces and practices of emancipation that can tackle these crises. At the same time, knowledge is perceived and used in different ways within social work. An ongoing debate across the fields of social work, and a contemporary challenge, is how to tackle these different perspectives on knowledge. In this workshop we take this debate as our starting point to explore how we can continue developing the concept of knowledge within social work. We will introduce a discussion by presenting results from a study of perspectives on knowledge. 30 focus groups have been done with actors within and around the social services, from users via case workers, development leaders, managers to politicians and policymakers, and also with universities. By highlighting the variation of perspectives on knowledge needed in social work, we want to initiate a discussion of how we, theoretically and empirically, can create a more advanced understanding of the concept of knowledge in the divergent landscape of social work. Are other concepts of knowledge needed in social work to handle this divergent landscape? How are these concepts linked to seeing social work as a catalyst for change when it comes to social justice? Can these concepts be used for creating spaces and practices of emancipation? 

I idéhistorikern Maria Josephsons bok Lex THX genomförs en historisk beskrivning av veterinärmedicinaren Elis Sandberg och hans kavlthymusextrakt THX. Det är en bok som belyser hur THX blev en omstridd behandlingsform under 1950-talet och där Sandberg hamnade i centrum för diverse strider att få fortsätta sin produktion. Det är också en studie som ger en närgången bild av det hopp behandlingen gav många svårt sjuka människor som inte fann den bot eller lindring som de önskade i den traditionella hälso- och sjukvården. Det är därmed en studie som utifrån detta alternativa preparat undersöker gränslandet till en framväxande välfärdsstat och med den en stark medicin. Det är helt enkelt en berättelse om hur den medicinska vetenskapen blev modern. 

The production of medical knowledge is highly materialized. When we look around us today we see that this materiality is sometimes capable of becoming invisible and we are left with medical facts about the aetiology of diseases or the importance of healthy living. If we apply a historical perspective it is instead the materiality that becomes visible, while the knowledge may have been forgotten and replaced with newer knowledge. What remains is the medical collections in our universities and museums. Here one can find human remains in the form of fetuses preserved in jars or anatomical models of skeletons. Sometimes the human remains are part of a controversial cultural heritage.

Det sociala arbetet är på många sätt kopplat till en materiell verklighet. Socialarbetaren sitter vid ett skrivbord, har ofta en dator framför sig under arbetsdagen, i närheten finns kanske en mobiltelefon. Men det är inte bara att socialarbetaren omger sig med olika föremål, en viktig del i arbetet är också att producera materialitet. Det kan till exempel vara dokument som produceras i datorn, skrivs ut, hamnar i en pärm eller kanske lämnas över för att skrivas under av en politiker. Dokument som ibland kan manifestera de beslut och insatser som ska göras. Också utanför kontoret kan materialiteten ha en betydelse för arbetet, som till exempel vid hembesök. Här blir tingen en viktig faktor i uppfattningen av klienten. Under senare år har digitaliseringen av samhället kommit att också införa nya ting i socialarbetarens arbetsvardag. Det är därför centralt att fråga sig vad som händer när socialarbetarens materialitet förändras, upplöses eller tar nya former som en effekt av digitaliseringen.

Detta kapitel tar sin utgångspunkt i att socialpedagogik bidrar med viktiga förhållningssätt till ett socialt arbete inom funktionshinderområdet, men diskuterar framförallt hur relationen mellan personen med funktionsnedsättning och socialarbetaren ska utformas. I en social praktik kan detta leda till att individens valmöjligheter begränsas, en praktik som inte sällan rättfärdigas med argumentet att det är för deras eget bästa. Men relationen och samspelet med andra människor bär också på möjligheter att främja individers autonomi. Syftet med kapitlet är därför att introducera en diskussion om den relationella autonomin som tar hänsyn till att en individs autonomi skapas i processer och i samspelet med andra människor.

Screening är en central medicinsk praktik i modern hälso- och sjukvård och en källa till kunskapsproduktion. Screening är en del av hur den medicinska verksamheten organiseras och ”görs” i en vardaglig praktik och som har som mål att skapa kunskaper om patienter och patientgrupper. Det är kunskaper som används bland annat för att förhindra hälsoproblem för individen, men också bidra till en bättre folkhälsa i samhället. Förhoppningarna för vad denna kunskapsproduktion kan åstadkomma är därför stora. Samtidigt är det inte en helt okomplicerad kunskapsproduktion. I antologin Screeningens mångsidighet: dess möjligheter och utmaningar behandlas denna komplexitet i nio kapitel och där kapitlen belyser screeningens mångsidighet både empiriskt och teoretiskt. Antologin är redigerad av Anette Wickström, Sofia Morberg Jämterud och Kristin Zeiler, alla verksamma i det växande fältet medicinsk humaniora. 

This poster will present our ongoing work with implementing an international, research based training resource on Frontline Practice Leadership (FPL) within group homes for people with intellectual disabilities and autism. The aim is to examine the context in which the work is performed, and whether FPL can be adapted and used by Swedish disability services and thus contribute to strengthening employees in occupational roles responsible for Practice Leadership. This special form of group home is controlled by the Swedish LSS law and that shall provide users with support and care based on their individual needs. LSS stipulate how users should be able to live like everyone else, promote equality and full participation in everyday life. At the same time, this form of accommodation sometimes creates ethical dilemmas when supporting the users' right to self-determination. This poster focusses on those ethical dilemmas, and what it means to work and manage operations within LSS housing and clarify the problems that exist around leadership when ethical dilemmas arise. Together with (+) 60 service pedagogue’s various empirical collections have been made: individual interviews, focus group interviews, observations and surveys. The poster will raise questions related to implementation of new working methods and emphasizes the significance of a comprehensive working model for person centered support. Furthermore, the concept of quality of life, which is central in FPL, entails in relation to a Swedish context. Finally, the occupational roles that is presented in this poster calls for new support structures regarding education and competence development.

This paper explores how people with disabilities encounter and manage limits and uncertainty within the Swedish healthcare sector. Previous research has pointed out that individuals with different forms of disability often meet health-care professionals that lack knowledge about their specific conditions. These limitations have also been defined as a form of medical paternalism, where the professional's knowledge is emphasized over the patient’s knowledge. Within disability research, this displacement has been categorized as a medical model in contrast to a social model where the patient's body is not the focus, but rather the context in which the individual lives. This is a theoretical model that can be viewed through cultural analytical lenses to explore liminal healthcare practices. This paper addresses these questions based on interviews done with people who have lived with disabilities and their experiences of seeking care in the healthcare sector. What kind of embodied experiences of liminality do they have in relation to healthcare? How do they navigate health inequalities in relation to liminal spaces of healthcare? In what ways does this create uncertainties in everyday life for people living with disabilities? One of the findings in the interviews is that it is not only the professionals’ lack of knowledge that generates inequalities, but also the material infrastructure in, for example, the hospitals. Therefore, in this paper it will be suggested that the medical model from disability research should also be elaborated with cultural analytical perspective on material culture.

Kollektivtrafik anses ofta vara särskilt betydelsefull för personer med funktionsnedsättning, då det kan finnas en begränsad tillgång till andra färdmedel. Trots ansträngningar för att överbrygga hinder i kollektivtrafiken, kvarstår idag betydande utmaningar. Personer med funktionsnedsättning gör generellt färre resor och deltar i färre aktiviteter utanför hemmet än personer som inte har några funktionsnedsättningar. Att resa i den allmänna kollektivtrafiken förutsätter en rad förmågor, som beror på ett samspel mellan resenär och olika miljöer, såsom informationsmiljöer, fysiska miljöer och sociala miljöer. Brister detta samspel uppstår ett funktionshinder som försvårar eller omöjliggör användning av kollektivtrafik. Rapporten syftar till att ge en översikt över arbetsområdet tillgänglighet i kollektivtrafiken och inkluderar exempel både från forskning och mer praktiskt arbete. Rapporten ska inte ses som en heltäckande översikt, utan ämnar snarare ge en överblick och nulägesbild över området. I rapporten presenteras en genomgång av vissa mål och regelverk som är relevanta utifrån tillgänglighet ur nationellt och europeiskt perspektiv. Därefter ges en nationell utblick som berör frågor om ansvar, information, och myndigheter som på olika sätt arbetar med frågor relaterade till tillgänglighet i kollektivtrafiken. En genomgång av forskning inom området görs ur ett mer övergripande perspektiv (en mer detaljerad genomgång kommer att publiceras i artikelformat framöver) och därefter med några exempel på forskningsrapporter som publicerats nationellt. Översikten ger även exempel på europeiska forskningsprojekt som på olika sätt berör frågor om tillgänglighet i kollektivtrafiken samt på andra pågående EU-initiativ inom området. Nationella studier har exempelvis belyst frågor om tillgänglighet i transportsystemet i regional planering. Författarna fann att tillgänglighet användes på olika sätt i planeringsdokument. Vidare menar författarna att tillgänglighet användes på olika sätt i de olika avdelningar som arbetade med kollektivtrafik, vilket försvårar samarbeten och helhetssynen kring tillgänglighetsfrågan. Tidigare K2-projekt har utgått från kunskap som insamlats genom en rad workshopar inom ramen för det svenska arbetet med EU-projektet TRIPS och fokuserade mot tillgänglighetsanpassning av digitala reseplanerare. Projektet identifierade ett flertal områden som är i behov av utveckling för att digitala verktyg ska kunna implementeras i svensk kollektivtrafik på ett framgångsrikt vis. En grundläggande utmaning handlade om att samla in och systematisera data som kan användas för att utveckla verktyg, samt att identifiera vilka aktörer som bör vara ansvariga för detta arbete. Rapporten visar också att det arbetas brett med frågan om tillgänglighet för alla i kollektivtrafiken, men att många utmaningar tycks kvarstå, både ur ett internationellt och ett nationellt perspektiv. Flertalet av de europeiska projekt som genomförts pekar på vikten av att inkludera personer med funktionsnedsättning i utvecklingen av tillgänglighet. Exempelvis i EU-projektet TRIPS lyfts delaktighet med principer om ”nothing about us without us” tillsammans med ett tydligt fokus på rättigheter för personer med funktionsnedsättning. Andra projekt lyfter vikten av att säkerställa att utvecklingen av digitala hjälpmedel måste ske på ett sätt som inkluderar personer med funktionsnedsättning, då det annars riskerar att gå i motsatt riktning och i allt högre grad verka exkluderande. Exempelvis projektet DIGNITY K2 Working Paper 2023:8 7 syftar till att utveckla metoder för att synliggöra och åtgärda den så kallade digitala klyftan mellan personer med funktionsnedsättning och det övriga samhället. Vid den snabba övergången till ett mer transporteffektivt samhälle, med digitalisering och nya mobilitetsformer, behöver uppmärksamhet riktas mot dem som behöver extra stöd och service för att få tillgång till kollektivtrafiken. I denna översikt har både fysiska hinder, sociala hinder och samordningsproblem uppmärksammats. Slutligen kan konstateras att kollektivtrafiken och dess olika sociala och fysiska dimensioner är ombytlig. Tillgänglighetsfrågor är inte något som på något sätt når ett slut, eller som man färdigställer genom enskilda insatser. Tillgängligheten i kollektivtrafiken utmanas ständigt, parallellt med de samhällsförändringar som sker och med hänsyn till de många olika behov och förutsättningar som vi alla har. Att fördjupa förståelsen för de funktionshinder som uppstår i kollektivtrafiken borde vara en central fråga i det fortsatta arbetet för alla människors möjligheter att vara inkluderade i samhället och för att minska riskerna för social exkludering och marginalisering.

Som forskare inom kollektivtrafik och funktionshinder har vi sett en utveckling där politiker och andra beslutsfattare talar alltmer om vikten av att kollektivtrafiken är tillgänglig för alla. Ändå går utvecklingen i motsatt riktning, skriver fem forskare vid K2, Nationellt kunskapscentrum för kollektivtrafik.

Hur påverkas socialtjänsten av att mötena med deras klienter blir digitala? När covid-19-pandemin kom blev den digitala tekniken en lösning för många att snabbt kunna anpassa sitt arbete i relation till Folkhälsomyndighetens smittskyddsrestriktioner. Kristofer Hansson – lektor i socialt arbete – har studerat hur det förändrade socialtjänstens arbete. 

Det har gjorts relativt lite forskning på dessa samlingar, så det är mycket välkommet att idéhistorikern Helena Franzén har närmat sig en del av denna materiella empiri i avhandling Kroppar i förvandling. Undersökningen fokuserar på de obstetriska och embryologiska samlingar vid Uppsala universitet och hon studerar tidsperiod mellan omkring 1830 till 1930. Under dessa hundra år kom den naturhistoriska kunskapsformen gå från att samla in, beskriva och taxonomiskt kategorisera de mänskliga objekten, till att överge dem och istället rikta sitt forskningsfokus mot andra objekt. Eller med Franzéns egna ord: ”Syftet är att undersöka hur medicinsk kunskap om fosterutveckling, graviditet och förlossning producerades och kommunicerades genom samlingsföremål tillhörande Uppsala universitet omkring 1830–1930” (s. 20).

Early in the COVID-19 pandemic, social workers at battered women's shelters and night shelters and church deacons in Sweden warned that they were at risk of losing contact with their clients. Thus, even though Sweden was never subject to a lockdown in 2020 or 2021, many of the signals from the social workers indicated that their lost clients were at risk of increased ill health, mental illness, and violence due to the situation produced by the pandemic. The aim of this chapter is to develop a theoretical and empirical understanding of this vulnerable position that was imposed on these client groups by the COVID-19 pandemic. These developments also created fear and worry among the social workers themselves, when it became clear to them that they were at risk of losing contact with their clients. Therefore, the concept of shared trauma is used to focus on the way in which care workers are exposed to similar impacts of collective traumatic events as their clients. From the start of the project in March 2020, a total of 25 different civil society organisations have been followed through short telephone interviews. The method is inspired by rapid ethnographies.

Imagine a brain in a petri dish in a biomedical laboratory. Not a whole brain, but a part grown with the help of cells. Through this collection of cells, the researchers perform various experiments. It may involve testing different disease models or experimenting with specific drugs to see how the brain cells react. The researchers can also remove, add or turn off specific genes to see how this brain reacts. Through these tests, medical knowledge is produced about the brain, but also about different brain diseases and treatments. Some of this neuroscientific knowledge can give medical understanding for developmental disability. It is knowledge that can be used to create diagnoses and classification systems which strengthen what we as critical disability researchers would call the medical model. These diagnoses and classification systems are not defined entities, but heterogeneous parts in the medical model. They are, one could say, in various ways linked back to the brain cells in the petri dish. The different parts are an assemblage where the medical knowledge about a specific developmental disability are linked to the materiality in the laboratory, as well to the doctor at the hospital or the person seeing the doctor. In this way, we as disability researchers might be able to transform our cultural framework, we use to criticize the medical model and turn this critique to the laboratory. Is the medical researcher´s work with the brain cells in a petri dish a practice that (re)produces not only the assemblage of what developmental disability is, but also the stigmatized and negative identity that many times exists in society around this disability? In this paper I want to elaborate critical disability theory to see if it can be used to understand the knowledge production practices in and outside the biomedical laboratory.

This study examines disabled people’s everyday experience of social exclusion in relation to the rapid growth of digital technologies in everyday practices. It highlights the relationships between the growing theoretical apparatus on how society changes with new digital technologies, and theories about how this might lead to new disabling barriers in the everyday lives of disabled people. To better understand disabled people’s everyday experiences of social exclusion in the digital age, it brings together insights from two different fields: digital technology, mainly in digital social science and digital humanities; and disability studies, with a focus on the digital divide. The study draws on empirical observations, photographs and interviews with adults with various disabilities in Sweden, and analyses their everyday experiences with the help of a theoretical framework. 

Our aim in this chapter is to explore how outbreak of the Covid-19 pandemic has revealed the existing methodological challenges and prospects in research on health vulnerabilities among the groups of foreign-born and migrant in Sweden. We focus on the strengths and weaknesses of different methodological approaches when dealing with the issue of accessibility to the (seemingly) inaccessible and absent groups. In other words, our intention is to discuss the issue of nonresponse bias in different methodological approaches rather than presenting empirical explanations for the situations that have arisen during the pandemic.

This book explores the societal resistance to accessibility for persons with disabilities, and tries to set an example of how to study exclusion in a time when numerous policies promise inclusion. With 12 chapters organised in three parts, the book takes a comprehensive approach to accessibility, covering transport and communication, knowledge and education, law and organisation. Topics within a wide cross-disciplinary field are covered, including disability studies, social work, sociology, ethnology, social anthropology, and history. The main example is Sweden, with its implementation of the United Nations Convention on the Rights of Persons with Disabilities within the context of the Nordic welfare state. By identifying and discussing persistent social and cultural conditions as well as recurring situations and interactions that nurture resistance to advancing accessibility, despite various strong laws promoting it, the book’s conclusions are widely transferable. It argues for the value of alternating between methods, theoretical perspectives, and datasets to explore how new arenas, resources and technologies cause new accessibility concerns — and possibilities — for persons living with impairments. We need to be able to follow actors closely to uncover how they feel, act, and argue, but also to connect to wider discursive and institutional patterns and systems. This book will be of interest to scholars and students of disability studies, social work, sociology, ethnology, social anthropology, political science, and organisation studies.

Vi lever i en tid där både bakterier och virus förändras i snabb takt och därmed också förändrar världen så som vi känner den. Under våren 2020 spreds coronaviruset hastigt och världen fick anpassa sig till en pandemi. Inte lika synligt, men likväl sakteligt föränderligt, ökar de antibiotikaresistenta bakterierna runt om i världen och ställer framför allt hälso- och sjukvården inför nya utmaningar. Detta kapitel tar sitt avstamp i att kulturanalytiskt förstå och analysera hur dessa olika utvecklingar hänger ihop och vad framför allt resistenta bakterier kan säga om nationalistiska och immigrantfientliga idéer. 

This article addresses people’s experiences with bacteria and the human body and examines the cultural meanings regarding concerns that society likely is running out of effective antibiotics. The empirical material comes from Sweden, and our analysis is framed through perspectives from the medical humanities. The interdisciplinary goal is to better understand the societal challenges of antibiotic resistance in the advent of a so-called post-antibiotic era. The study presents results from the “If antibiotics stop working” questionnaire which was distributed with the help of The Folklife Archives with the Scania Music Collections at Lund University. We argue that the concept of a post-antibiotic era can open a more imaginary way of thinking about what future relationships are possible if antibiotics were to lose their curative power.

In 1968, the French philosopher and sociologist Henri Lefebvre published his book The right to the city (Lefebvre, 2009). From the original idea of the book — that cities are for people, building collective life and not for capitalist transactions where city life is commodified and citizens mere consumers — the concept of “the right to the city” has become widely employed by different grassroots organizations aiming for social justice in the city. In the following, I will give examples of how recognition is fundamental in planning the urban environment and giving people with disability — citizens and inhabitants of the city — equal access to the city. This photo essay originates with the importance physical environment has for accessibility and the spatial justice for everyone to take place in the city on equal terms. Through a few photographs taken in situations where I carried out so-called ‘go-along’ with persons using electric wheelchairs, I will discuss and analyse the relationship between the physical environment and the individual.

Purpose: This study piloted an international, research-based training resourceon Frontline Practice Leadership (FPL). The aim was to examine whether this resource can be adapted and used by Swedish disability services and thus contribute to strengthening employees in occupational roles responsible for Practice Leadership.

Method: Six service pedagogues and their managers (12 participants in total) participated in a pilot study to review the training resource. Participants provided their reflections on the training and the model for FPL.

Results: Participants found the resource to be informative and useful, and potentially beneficial to staff who work in Swedish disability services. The study identified the need to consider how FPL will be implemented in the existing organizational structure in Swedish disability services.

Implications: The study raises issues related to implementation of new working methods and emphasizes the significance of a comprehensive working model for person-centred support. Furthermore, the concept of quality of life, which is central in FPL, entails implications that need to be discussed in relationto a Swedish context. Finally, the emergence of occupational roles in the interface between management and practice calls for new support structures regarding education and competence development.

Att använda organ från djur i människor innebär ett risktagande. I mitten av 90-talet stoppades sådana försök på grund av rädsla för viruspandemier, skriver docent Kristofer Hansson. 

I det värsta scenariot utvecklar regionerna och kollektivtrafikföretagen en kollektivtrafik som stänger ute en stor grupp människor från att fritt kunna röra sig i samhället. Kollektivtrafikens huvudmän måste arbetar mot två mål samtidigt, skriver Hanna Egard och Kristofer Hansson vid Institutionen för socialt arbete, Malmö universitet.

The article focuses on the work of clinical social workers who, on the one hand, respond to the emotions that children and families experience after the child is diagnosed with the chronic disease diabetes, on the other hand, deal with various bureaucratic processes aimed at ensuring that the child’s medical needs are met in the family’s new life. The work is directed towards two different worlds that are interdependent, yet bringing them together fre­quently necessitates a balancing act. The purpose is to examine how the social worker deal with these two worlds in the encounter with the child and the family. A result is the document’s role when the social worker translates the family’s new everyday life into a language that can generate assistance or allowance from the state.

Hälso- och sjukvårdkuratorn har en särställning inom den svenska hälso- och sjukvården. Med sin socialvetenskapliga och interdisciplinära kompetens bevakar och adresserar kuratorn frågor angelägna inom det socialmedicinska sammanhanget. Genom att placera människans hälsa och sjukdom i en samhällelig kontext bidrar kuratorn med ett samhällsvetenskapligt perspektiv på patientens levnadsförhållanden och hur olika typer av sårbarhet påverkar mående. Med sin förankring i socialt arbetet har kuratorn unika förutsättningar för att se, stödja och behandla patienter och deras närstående. I och med kuratorslegitimation, som infördes 1 juli 2019, sker en ny riktning för de socionomutbildade där hälso- och sjukvårdskuratorna kan sägas gå i bräschen. Temanumret samlar forskning om både interventioner och behandlingar, yrkesrollens funktion och utmaningar, och kritiska reflektioner över hälso- och sjukvårdskuratorns arbetsvillkor.

The study presented in this article is about the role played by imagination when national and international organisations convey the idea of a dystopian crisis involved in the real transition to a postantibiotic era. The present is an era that can be defined as a time when no new antibiotics are discovered or developed, and existing antibiotics simultaneously become less effective since bacteria develop resistance against the active substances. Today, antibiotic resistance is an international fact; thousands of people die every year in Europe and the USA as a result of bacteria that have become resistant. Then, imagination can conjure up a different and a much more dystopian future. This article stems from a public debate concerning the global increase of antibiotic resistance; and will examine how the concept of fantasy and imagination is central in picturing such a future crisis in society. The article’s empirical basis mainly consists of reports from global and Swedish organisations, dating from the 1990s and onwards. These fantasies show that our society has a strong urge to always try to understand and explain present time and to identify how ‘our’ era relates to the past as well as the future. The concept of crisis plays an important role in these fantasies, it is key to use it when thinking about change. The analysis builds on texts and illustrations from global organisations like the WHO and also national authorities in Sweden that aim to convey the science behind the challenge. The aim is to develop a theoretical and empirical understanding, from the perspective of cultural analysis, of how fantasy and crisis are linked when the future is conceived.

Accessibility today has a contradictory character. One the one hand, people with disabilities are welcomed and included, with ambitious promises in policies and declarations. On the other hand, they are still excluded in everyday practices. This volume explores this contradiction in three areas: city and transport, knowledge and education, and law, institutions and history. Sweden is the primary case, but the ambition is wider. The compilation includes studies rooted in disability studies, social work and sociology, as well as ethnology, cultural geography and gender studies, political science and law, architecture, history, anthropology and linguistics. It involves a range of theories and methods, from participant observation to historical analyses using archival data, from critical disability theory to ethnomethodology. Since resistance to accessibility today takes various forms, and transforms as society itself changes, we need to equip ourselves with a corresponding plurality and dexterity. Researchers have to be on the move, like the United Nations itself, whose 2006 Convention on the Rights of Persons with Disabilities looks complete but requires constant monitoring to get nation-states to actualise its intentions. To study accessibility is to study exclusion and its constant drama, and in a democratic society this is highly relevant.

In this paper I will use the questionnaire “If antibiotics stop working” that was distributed with the help of The Folklife Archives with the Scania Music Collections at Lund University between 2017 and 2018. Over 100 replies came in and some from those who answered discussed the meaning of microbiota. In these themes, the narratives focus on the relation between food and a healthy body. Its semes as if the goal is to find a bodily balance where good and healthy bacteria can stop what is harmful and evil to the body and comes from the outside – let it be resistant bacteria, viruses, or other dangerous microbes. In this way the narratives generate imaginaries for which relationships the individual should have with microbes at large. But it is also imaginaries that can affect gut feelings and consciousness when the individual shop for food or sit down at the dinner table to eat. I will in my paper use Esposito's (2011) theories on how the body needs to be analyzed as “the negation of a negation“. In what ways do the narratives from the questionnaire problematize this theory of how the body can be reformed and refined by letting the “right” bacteria’s in? Or with other words, how is “evil” seen as something that shall be fought from inside?

Vad detta kapitel intresserar sig för är att närmare undersöka hur övergripande, men konkreta, förändringar tog sig ett tidigt uttryck på en specifik psykiatrisk klinik under tidigt 1970-tal. Försöksverksamheten som studeras är kallad ”Pol II” och startade redan i början av 1970-talet. Från professionens sida – inte minst läkarnas – försökte man anpassa den psykiatriska kliniken till de nya kulturella strömningar som fanns ute i samhället och som nu genomströmmade de medicinska rummen. Syftet med kapitlet är att närmare undersöka hur denna genomströmning påverkade ett specifikt medicinskt rum på Södersjukhuset i början av 1970-talet.

Möjligen skulle det kunna hävdas att renlighet inte bara är ett nyckelord inom den etnologiska forskningen, utan att det faktiskt format ämnet i så hög grad att det skulle vara svårt att förstå etnologi utan den forskning som gjorts om just renlighet. Många är de avhandlingar och forskningstexter som utgått från begreppen orenande och tabu som Mary Douglas kastade ljus över redan 1966. Med hjälp av kulturella anomalier och tvetydigheter i samhället söker etnologen efter diskursiva och materiella mekanismer som bemödar sig att hålla smutsen på avstånd. Som en kulturanalytisk teori har därför renlighet visat sig mycket användbar för att undersöka hur kulturella kategoriseringar är verksamma i vitt skilda områden. Vad som inte har beforskats i lika hög utsträckning är hur dessa praktiker kring renlighet kom att sammanflätas med en ny syn på hälsa i välfärdsstatens begynnande barndom. I föreliggande antologi undersöks detta i tio kapitel skrivna av forskare inom ämnena historia, idé- och lärdomshistoria, ekonomisk historia, etnologi och folkloristik. Här öppnas många nya forskningsfält upp kring renlighet.   

The rapid development in biomedicine creates knowledge-intensive policy fields on national and international arenas. In our ongoing project “Biomodifying technologies in change” we study presumably game-changing technologies such as CRISPR-cas9, iPS cells, xenotransplantation and 3D bioprinting. The project could be categorized as part of an ”engaged program”, using Sismondo’s terminology (2008), in that we do not separate the epistemological dimensions from the political aspects of the science practices we study. Rather, we understand language and material processes in research as already in themselves always normative. Hence, the strife to make transparent and democratize scientific and technological processes, is somehow built into the research scope itself - even if not a directly activist agenda.

One of the aims of the project is to understand how “responsible researchers” are fostered. We look into how ethical reflexivity is expressed, practiced and understood in the day-to-day of biomedical research environments. But what happens to our knowledge production when we make biomedical researchers engage in this bird’s-eye view on their research and its socio-cultural circumstances? How can neither taking a distanced position, nor engaging in direct activism but rather pushing toward areas we consider possible hotbeds for public debate be further theoretically conceptualized? What does such an endeavor imply for our role as STS scholars? And how does that connect to the tendency to engage humanities and social science scholars as interpreters and mediators in cross-disciplinary projects in knowledge-intensive policy fields, such as ours ? In what way is the symmetry principle (Bloor, 1976) affected, when value-laden initiatives as ethical reflexivity and public engagement is treated as an inherent good or as “truths” to be pursued?

Antimicrobial resistance, or AMR, is a global challenge, with the WHO declaring it one of the ‘top 10 global public health threats facing humanity’. Specifically, the WHO, governments and researchers have highlighted the ‘misuse and overuse of antimicrobials’, and the lack of clean water, sanitation and preventative measures, specifically noting concern over resistant strains of gonorrhoea, methicillin-resistant Staphylococcus aureus influenza, HIV, malaria and tuberculosis (WHO 2021). AMR leads to increased morbidity, mortality and costs from infections, not least as a patient may cycle through several antimicrobials before an effective one is prescribed. Additionally, many second-line and third-line (and beyond) antimicrobials are not readily available in low-resource settings. Moreover, antimicrobials are regularly prescribed as a prophylaxis, for instance, to prevent infection in routine surgeries (WHO 2021).

This study explores how social work professionals at women’s shelters in Sweden experience, understand, and are responding to domestic violence under the impact of the COVID-19 pandemic. A qualitative longitudinal research design was employed, and multiple semi-structured interviews were conducted with 14 professionals at women’s shelters over a period of one year. The results are presented in three overall themes; (a) professional challenges due to increased needs, (b) professionals’ adjustments to new circumstances, and (c) professionals’ attributions regarding client barriers to help seeking. The results show diverse and changing experiences among the professionals as the pandemic progressed. Clients and professionals have shared the same collective trauma associated with the pandemic, which has affected the professionals’ understanding of and response to domestic violence. The professionals understand both clients and themselves as being more vulnerable and susceptible to risk under these new circumstances. Social work adjustments focused on maintaining contact, reducing risk and prioritizing safety, which had both positive and negative consequences for both clients and professionals. The study concludes that the professionals coped with the uncertainty they experienced during the pandemic by relying on both their previous knowledge and work experience of domestic violence and their experience of sharing trauma with clients.

Hälso- och sjukvårdkuratorn har en särställning inom den svenska hälso- och sjukvården. Med sin socialvetenskapliga och interdisciplinära kompetens bevakar och adresserar kuratorn frågor angelägna inom det socialmedicinska sammanhanget. Genom att placera människans hälsa och sjukdom i en samhällelig kontext bidrar kuratorn med ett samhällsvetenskapligt perspektiv på patientens levnadsförhållanden och hur olika typer av sårbarhet påverkar mående. Med sin förankring i socialt arbetet har kuratorn unika förutsättningar för att se, stödja och behandla patienter och deras närstående. I och med kuratorslegitimation, som infördes 1 juli 2019, sker en ny riktning för de socionomutbildade där hälso- och sjukvårdskuratorna kan sägas gå i bräschen. Temanumret samlar forskning om både interventioner och behandlingar, yrkesrollens funktion och utmaningar, och kritiska reflektioner över hälso- och sjukvårdskuratorns arbetsvillkor. 

Aims: Antimicrobial resistance presents an increasingly serious threat to global public health, which is directly related to how antibiotic medication is used in society. Actions aimed towards the optimised use of antibiotics should be implemented on equal terms and according to the needs of the population. Previous research results on differences in antibiotic use between socio-economic and demographic groups in Sweden are not entirely coherent, and have typically focused on the effects of singular socio-economic variables. Using an intersectional approach, this study provides a more precise analysis of how the dispensation of antibiotic medication was distributed across socio-economic and demographic groups in Sweden in 2016-2017. Methods: Using register data from a nationwide cohort and adopting an intersectional analysis of individual heterogeneity and discriminatory accuracy, we map the dispensation of antibiotics according to age, sex, country of birth and income. Results: While women and high-income earners had the highest antibiotic dispensation prevalence, no large differences in the dispensation of antibiotics were identified between socio-economic groups. Conclusions: Public-health interventions aiming to support the reduced and optimised use of antibiotics should be directed towards the whole Swedish population rather than towards specific groups. Correspondingly, an increased focus on socio-economic or demographic factors is not warranted in interventions aimed at improving antibiotic prescription patterns among medical practitioners.

This special issue of Ethnologia Europaea explores new paths for our scientific disciplines within the expanding field of medical humanities. Medical humanities have seen a significant expansion in recent years, creating new research foci and leading to collaborations both within and outside of the humanities. As it is a growing academic field, we argue that it is necessary to be part of the medical humanities in defining and conceptualising new paths. The contributions to this special issue demonstrate the ways in which disciplines like European ethnology, folklore studies, social and cultural anthropology can contribute to the expansion, drawing upon ethnographic fieldwork from Croatia, Estonia, Slovenia and Sweden. This special issue opens a space for more collaboration within our fields, as well as with medicine. 

This special issue of Ethnologia Europaea explores new paths for our scientific disciplines within the expanding field of medical humanities. Medical humanities have seen a significant expansion in recent years, creating new research foci and leading to collaborations both within and outside of the humanities. As it is a growing academic field, we argue that it is necessary to be part of the medical humanities in defining and conceptualising new paths. The contributions to this special issue demonstrate the ways in which disciplines like European ethnology, folklore studies, social and cultural anthropology can contribute to the expansion, drawing upon ethnographic fieldwork from Croatia, Estonia, Slovenia and Sweden. This special issue opens a space for more collaboration within our fields, as well as with medicine. 

Hälso- och sjukvårdskuratorernas legitimation infördes 1 juli 2019. Legitimationen har skapat en ny riktning för de socionomutbildade och samtidigt tydliggjort vikten av att placera hälso- och sjukvårdens hälsobegrepp i en samhällelig kontext. Därmed sätter förändringen ljus på viktiga frågor som hälso- och sjukvården brottats med under lång tid och som nu skulle kunna debatterats på allvar med kuratorn i centrum.

This chapter analyses how security has become a central topic for public transport in Sweden and how it can be understood in relation to people with disabilities who experience insecurity when traveling by bus or train. The chapter analyses public transport using Michel Foucault’s concept of dispositif de sécurité, namely how institutions and administrative arrangements maintain and enhance a certain form of control to reduce uncertainty among those who travel. This perspective is used to better understand today’s political goal that public transport should not only be accessible by being secure, but also by being usable for all. The chapter discusses the experiences of three individuals to show how uncertainty arises in everyday situations using public transport. It argues that there is a difference when it comes to security – on one side it is a feeling in people’s everyday lives, and on the other it is a predictable and transparent perspective in a specific system. In this way, security – in relation to accessibility – is framed by transport organisations as something that people with disabilities can expect when they use public transport. At the same time, the individual experiences often only fit into the rhetoric if they are transformed into the organisations’ way of looking at security, let alone as numbers in a diagram or as programme text.

When the Covid-19 pandemic reached Sweden, civil society organizations and their activities were affected to varying degrees, as was the rest of society. This article examines how three different civil society organizations – the Church’s deacons, women’s shelters and organizations that support the homeless – were affected by the pandemic. The purpose is to describe and investigate what so-called alignment work was carried out in three different spheres of civil society during the pandemic. This study has followed fourteen different civil society organizations from March 2020 that are active in various places in southern Sweden. This has been done through short telephone interviews. The term alignment work analyses the work of the civil society representatives to continue and maintain social work despite heavy restrictions. In other words, a form of harmonization between, on the one hand, the guidelines and risks created by the pandemic, and, on the other hand, the continued social need for help, support and care.

Att leva med bakterier: möjligheter till ett levbart immunitärt liv är en antologi som tvärvetenskapligt undersöker betydelsen av bakteriers växande antibiotikaresistens. Detta är en förändring som håller på att göra antibiotikan ineffektiv och därmed omskapa den mänskliga historien på lång sikt. Det uppskattas att tio miljoner människor år 2050 kommer att dö av infektioner som inte längre svarar på den i dag tillgängliga antibiotikan. Hur kan vi här och nu hitta alternativa vägar mot en mer levbar framtid – med eller utan verksam antibiotika? Antologin är ett resultat av det tvärvetenskapliga forskarsamarbete som under 2019-20 bedrevs vid Pufendorfinstitutet, Lunds universitetet under Temat Postantibiotiska framtider. I antologin utvecklar tio forskare sina tankar och idéer kring hur samhället idag och i morgon kan utformas för att hantera smittämnen som bakterier och virus i vår vardag. Smittämnen det i framtiden kanske inte finns något botemedel mot.