This study explored patients' experiences of participation and non-participation in their health care. A questionnaire-based survey method was used. Content analysis showed that conditions for patient participation occurred when information was provided not by using standard procedures but based on individual needs and accompanied by explanations, when the patient was regarded as an individual, when the patient's knowledge was recognized by staff, and when the patient made decisions based on knowledge and needs, or performed self-care. Thus, to provide conditions for (...) true patient participation, professionals need to recognize each patient's unique knowledge and respect the individual's description of his or her situation rather than just inviting the person to participate in decision making. (shrink)

Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were (...) to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction. The procedure included linguistic translation and cultural adaptation of MDS-R’s paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care. To achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens. Translation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients. (shrink)

This study presents findings from an ontological and contextual determination of the concept of dignity. The study had a caritative and caring science perspective and a hermeneutical design. The aim of this study was to increase caring science knowledge of dignity and to gain a determination of dignity as a concept. Eriksson’s model for conceptual determination is made up of five part-studies. The ontological and contextual determination indicates that dignity can be understood as absolute dignity, the spiritual dimension characterized by (...) responsibility, freedom, duty, and service, and relative dignity, characterized by the bodily, external aesthetic dimension and the psychical, inner ethical dimension. Dignity exists in human beings both as absolute and relative dignity. (shrink)

The paediatric Moral Distress Scale-Revised was previously translated and adapted to Swedish paediatric oncology. Cognitive interviews revealed five not captured situations among the 21 items, resulting in five added items: 22) Lack of time for conversations with patients/families, 23) Parents’ unrealistic expectations, 24) Not to talk about death with a dying child, 25) To perform painful procedures, 26) To decide on treatment/care when uncertain. The aim was to explore experiences of moral distress in the five added situations in the Swedish (...) paediatric MDS-R, among healthcare professionals in paediatric oncology. In this national cross-sectional survey, the Swedish paediatric MDS-R, including five added items, were used. Descriptive statistics, non-parametric analysis of differences between professions and a MDS-R score for each item were calculated. Internal consistency was tested using Cronbach’s alpha and inter-item correlation test. HCPs at all six Swedish paediatric oncology centres participated. The Regional Ethical Review Board had no objections. Consent was assumed when the survey was returned. Nursing assistants reported higher intensity and lower frequency on all added items; registered nurses reported a higher frequency on item 22–25; medical doctors reported higher MDS-R score on item 26. On item 22, intensity was moderate for RNs and MDs and high for NAs, and frequency was high among all. Item 22, had the second highest MDS-R score of all 26 for all professional groups. On item 23, the level of disturbance was low but it occurred often. The 26-item version showed good internal consistency for the overall sample and for all professional groups. However, item 22 and 24 could be viewed as redundant to two of the original 21. In accordance with other studies, the intensity was higher than the frequency, however, the frequency of the added items was higher than of the original items. In line with previous research, item 22 and 23 are important elements of moral distress. RNs experience the situations more often while NAs find them more disturbing. The results indicate that the added items are important in capturing moral distress in paediatric oncology. (shrink)

In nursing practice, awareness of ethical inner values and a common understanding of nursing and caring are needed. It is therefore important to highlight ideas of caring in nursing practice. The aim of this paper was to illuminate nursing, caring and ethical inner values in caring and caring in nursing practice. By being attentive, open, respectful and treating the patient as a person, nurses can enhance both their own and the patient's sense of personal meaning in the caring relationship. Nurses (...) can use self‐reflection to create an awareness of nursing, caring and ethical inner values in caring. (shrink)

As the distance between science and society is collapsed with the growth of contemporary knowledge societies, so a range of different approaches to the democratic governance of science superseding its Enlightenment government is emerging. In light of these different approaches, this article focuses on the figure of the scientific citizen and the variable dimensions of a new scientific citizenship. Three models of democracy - advanced consumer, deliberative and radical/pluralist - are put forward as both partly competing and partly complementary frameworks (...) within which the new rights and responsibilities of the scientific citizen can be articulated and discussed. In each case the theory and practice of scientific citizenship are viewed against the background of contemporary developments within the field of science communication; the rise of the public understanding of science movement; the new enthusiasm for advancing public engagements with science, and the legitimate place of different forms of public protest and dissent within new designs for democratic governance. (shrink)

BackgroundMoral distress has been described as an emotionally draining condition caused by being prevented from providing care according to one’s convictions. Studies have described the impact of moral distress on healthcare professionals, their situations and experiences. The Measure of Moral Distress for Healthcare Professionals (MMD-HP) is a questionnaire that measures moral distress experienced by healthcare professionals at three levels: patient, system and team. The aim of this project was to translate and make a cultural adaption of the MMD -HP to (...) the Swedish context.MethodsThe questionnaire comprises 27 items, rated according to frequency and intensity on a five-point Likert scale (0–4). The procedure for translating MMD-HP followed WHO guidelines (2020). These entailed a forward translation from English to Swedish, a back translation, expert panel validation, pretesting and cognitive face-to-face interviews with 10 healthcare professionals from various professions and healthcare contexts.ResultsThe Swedish version of MMD-HP corresponds essentially to the concept of the original version. Parts of some items’ had to be adjusted or removed in order to make the item relevant and comprehensible in a Swedish context. Overall, the cognitive interviewees recognized the content of the items which generally seemed relevant and comprehensible.ConclusionThe Swedish version of MMD-HP could be a useful tool for measuring moral distress among healthcare professionals in a Swedish healthcare context. (shrink)

(1998). A note on ‘The idea of the university in the global era: From knowledge as an end to the end of knowledge’. Social Epistemology: Vol. 12, Sites of Knowledge Production: The University, pp. 85-88. doi: 10.1080/02691729808578865.

The aim of this study was to understand how mothers experienced midwives' uncaring behaviour and actions during birth. Sixty-seven first-time mothers took part in the study, in which data were collected through interview. The interview text was analysed using hermeneutic text analysis. Nearly half of the mothers interviewed (n = 32) said that midwives did not care for them. The findings show that midwives' behaviour was humiliating when they ignored mothers and held them in contempt. The mothers felt further humiliated (...) when the midwives did not believe them, treated their bodies in a careless manner and tended to put blame on them. Through their behaviour and actions, some midwives have shown that they no longer have a caring attitude as an element of their professional practice and that they have ignored ethics by offending mothers' sense of dignity. (shrink)

Feeling old: being in a phase of transition in later life The aim of the study was to illuminate very old persons’ experiences of feeling old in order to get a nuanced understanding of the ageing process in later life. Fifteen persons 85–96 years of age, living in their own homes, were interviewed in‐depth. Data were analysed utilising a phenomenological‐hermeneutic approach. Eight persons reported that they felt old. The experience of feeling old entailed four characteristics: being able to date the (...) beginning of feeling old, fear of helplessness and of being unable to manage one’s life situation, not recognising one’s former self, and feeling different from others. These characteristics corresponded to the main properties of a transition process. The comprehensive understanding was that the very old persons who also felt old were in a phase of transition. The distinguishing qualities of those that felt old were also found to be in line with the dystonic dominance in the ninth stage designated by Joan Erikson of the previously described life cycle. Knowledge about transition processes and sensitivity to very old people’s experiences of feeling old are of great importance to nursing in order to provide adequate health care services and prevent unhealthy transitions. (shrink)

Background: Ethical climate and moral distress have been shown to affect nurses’ ethical behaviour. Despite the many ethical issues in paediatric oncology nursing, research is still lacking in the field. Research aim: To investigate paediatric oncology nurses’ perceptions of ethical climate and moral distress. Research design: In this cross-sectional study, data were collected using Finnish translations of the Swedish Hospital Ethical Climate Survey–Shortened and the Swedish Moral Distress Scale–Revised. Data analysis includes descriptive statistics and non-parametric analyses. Respondents and research context: (...) Ninety-three nurses, working at paediatric oncology centres in Finland, completed the survey. Ethical considerations: According to Finnish legislation, no ethical review was needed for this type of questionnaire study. Formal research approvals were obtained from all five hospitals. Return of the questionnaire was interpreted as consent to participate. Results: Ethical climate was perceived as positive. Although morally distressing situations were assessed as highly disturbing, in general they occurred quite rarely. The situations that did appear often reflected performing procedures on school-aged children who resist such treatment, inadequate staffing and lack of time. Perceptions of ethical climate and frequencies of morally distressing situations were inversely correlated. Discussion: Although the results echo the recurrent testimonies of busy work shifts, nurses could most often practise nursing the way they perceived as right. One possible explanation could be the competent and supportive co-workers, as peer support has been described as helpful in mitigating moral distress. Conclusion: Nurturing good collegial relationships and developing manageable workloads could reduce moral distress among nurses. (shrink)

There are two main ways of understanding the function of surrogate decision making in a legal context: the Best Interests Standard and the Substituted Judgment Standard. First, we will argue that the Best Interests Standard is difficult to apply to unconscious patients. Application is difficult regardless of whether they have ever been conscious. Second, we will argue that if we accept the least problematic explanation of how unconscious patients can have interests, we are also obliged to accept that the Substituted (...) Judgment Standard can be coherently applied to patients who have never been conscious at the same extent as the Best Interests Standard. We then argue that acknowledging this result is important in order to show patients respect. (shrink)

The article is based on the argument that labour market segregation is an important factor contributing to women’s inequality in the labour market. Therefore, any equal opportunities policy has to be combined with a policy to reduce segregation. But up to now segregation has been extremely persistent, as is shown in a short empirical overview of segregation in the Austrian labour market. It is argued that the roots of this phenomenon lie in the assignment of men and women to the (...) market area and the reproduction area according to the breadwinner model. Labour market segregation by sex can be seen as a transformation and continuation of the asymmetrical gender relation in the family to the labour market. Most of the mechanisms and processes that occur every day in the labour market work together to preserve sex segregation. Strategies to reduce segregation should look at these historical roots of segregation and at the connection with the overall gender division of labour. Different perspectives on a reduction of labour market segregation are presented. (shrink)

The term gurlesque refers to an aesthetics that mixes feminism, femininity, the grotesque and the cute. This article explores how contemporary Swedish feminist comic books do gurlesque theory with the aim of contributing to the theoretical conversation about feminine aesthetics and gurlesque. The study focuses on two contemporary Swedish comic books, Jag är din flickvän nu by Nina Hemmingsson and Allt kommer bli bra by Lisa Ewald. The article views gurlesque as a queer aesthetics, as a form of wilful misinterpretation (...) and taunting of perceptions of femininity. The word gurlesque draws from the word ‘girl’, and questions the connection between girlhood and young age from a queer perspective. Although the gurlesque is rooted in images of girlhood, it has the potential to grasp femininities of all ages. (shrink)

The importance of including performance-related body mechanics into music education to improve performance quality and prevent performance-related injuries has been stressed by many researchers recently. However, it is unclear how this information could be delivered most effectively. The somatic method ‘Timani’ provides a practical solution by combining expertise in music performance and functional body mechanics with the goal of achieving a more efficient playing technique. Since no in-depth study has been conducted to assess the method before, we explored the impact (...) of this method on young musicians’ performance through an online, 4-week-long Timani intervention with a mixed-methodology design. 17 students were recruited from the Norwegian Academy of Music. They participated in two group workshops at the beginning and the end of the project and received four individual Timani sessions administered by certified teachers. We collected survey data at the workshops about performance-related pain and self-efficacy, and qualitative feedback after each session. In addition, all sessions were observed by the researcher and semi-structured interviews were conducted with the teachers about the perceived outcomes and their experiences with teaching the method online. Our findings show that the intervention had a positive impact on a physical, professional, and to some extent, psychological and behavioral level. The improvements included better posture when playing, enhanced control and dexterity in the upper extremities, and improved breathing mechanisms. The seven students who had performance-related pain pre-intervention reported a reduction in the discomfort. The positive results were achieved by the dual expertise of the teachers in music performance and functional body mechanics, the structure of the sessions, the communication, and the pedagogical tools used. Both students and teachers felt that administering the sessions online was satisfactory and produced good results. Timani is a promising method to establish healthy playing and singing habits thus improving performance quality and preventing performance-related problems and has great potential in reducing pre-existing injuries and pain. Also, it can be effectively taught online which has further implications for the logistics of delivery. (shrink)

How can we rethink anthropology beyond itself? In this book, twenty-one artists, anthropologists, and curators grapple with how anthropology has been formulated, thought, and practised 'elsewhere' and 'otherwise'. They do so by unfolding ethnographic case studies from Belgium, France, Germany, Italy, the Netherlands, and Poland - and through conversations that expand these geographies and genealogies of contemporary exhibition making. This collection considers where and how anthropology is troubled, mobilised, and rendered meaningful. 'Across Anthropology' charts new ground by analysing the convergences (...) of museums, curatorial practice, and Europe's reckoning with its colonial legacies. Situated amid resurgent debates on nationalism and identity politics, this book addresses scholars and practitioners in fields spanning the arts, social sciences, humanities, and curatorial studies."--Page 4 of cover. (shrink)

Children’s school journeys have changed vastly during recent decades: More children are being driven to school in private cars instead of walking and cycling, with many who are entitled to a free school bus service still being driven. Earlier research into travel mode choice has often investigated how urban form impacts upon mode choice regarding school journeys – in particular how urban form hinders or enables the use of the active mode. This paper quantitatively explores parents’ stated reasons for choosing (...) the car and the relationship between these reasons and the decision to use the car to take their children to school. We additionally investigate the relationship between sociodemographic factors, distance, and both the stated reasons and the actual mode decision. A sample of 245 parents (194 women) of school children aged 10-15 in the County of Värmland in Sweden were included in the study. The results of PLS-SEM show that the factor Social convenience has a direct relationship with the frequency of car use indicating that the wish to accompany the child and the convenience of car impacts on car choice. If the child is not allowed to travel independently, the parents choose the car to take him/her to school. Sociodemographic factors had a direct relationship with the stated reasons, whereby parents with a higher level of education valued safety/security less. Quite surprisingly, distance (i.e. environmental factor) did not affect car use, indicating that parents drive their children to school regardless of distance. By isolating the particular reasons for choosing the car, this paper focuses on a potentially important missing piece as regards finding out what motivates the increasing car usage in children’s school journeys. An increased knowledge of what motivates the decision to take children by car is important for effective policies aimed at changing parents’ inclination towards choosing the car. (shrink)

The aim of this study was to elucidate municipal night registered nurses’ (RNs) experiences of the meaning of caring in nursing. The research context involved all night duty RNs working in municipal care of older people in a medium-sized municipality located in central Sweden. The meaning of caring in nursing was experienced as: caring for by advocacy, superior responsibility in caring, and consultative nursing service. The municipal night RNs’ experience of caring is interpreted as meanings in paradoxes: ‘being close at (...) distance’, the condition of ‘being responsible with insignificant control’, and ‘being interdependently independent’. The RNs’ experience of the meaning of caring involves focusing on the care recipient by advocating their perspectives. The meaning of caring in this context is an endeavour to grasp an overall caring responsibility by responding to vocational and personal demands regarding the issue of being a RN, in guaranteeing ethical, qualitative and competent care for older people. (shrink)

Among the classical pragmatists Charles Sanders Peirce is often regarded as the most removed from practical affairs; he is seen as the most ‘scientific’. The aim of this article is to show his practical usefulness in daily affairs in determining that ‘which is the case’. The abductive inference had a pivotal role in his pragmatist theory of inquiry. As Umberto Eco has shown, abduction is as equally central in the writing of detective stories as it is in the making of (...) science. Recently, abduction has gained a renewed interest not only in the idea that science is basically ‘conjectural’ (Ginzburg and Popper), but also in different versions of critical realism. Here abduction gains interest as a ‘theoretical inference’ of special concern for the social sciences. An overview of various usages of abduction, from Eco to Bhaskar, is followed by a critical pragmatist assessment. (shrink)

The Will Theory of Rights has commonly been criticized for excluding from the class of rights bearers all subjects who are incapable of agency. The Interest Theory of Rights faces the challenge of avoiding undue proliferation of the class of rights bearers. I advance a novel argument for a specific demarcation of the class of rights bearers. I then argue that this demarcation implies that the function of the moral rights of subjects incapable of exercising agency is to protect them (...) from being treated with illegitimate disregard in a certain sense. I advance reasons for holding that this theory is neither a Will Theory nor an Interest Theory, or a combination of these theories. The proposed account is significant also if it is interpreted as a version of the Interest Theory. It brings significant benefits in the form of cohesiveness, simplicity, and intuitive appeal. (shrink)

IntroductionRights-ethicists intensely debate what properties of an individual are necessary and sufficient in order for that individual to have moral rights. At the heart of this important debate is the issue of whether individuals such as human foetuses, infants, and unconscious adults have moral rights, and if so, what these rights are. This paper focuses on the moral status of unconscious adults, as well as human foetuses, which are potential agents in the sense that they follow a “normal” path of (...) development towards agency. Using Michael Tooley’s (Tooley 1983) and Jeff McMahan’s (McMahan 2002) influential discussions on this topic as a point of departure, this paper defends two claims. (1) Possession of the capacity for autonomous agency that is temporarily “blocked” by sleep or coma is sufficient in order for an individual to have intrinsic worth and thus, moral rights. (2) If possession of the blocked capacity for autonomous agency is sufficient in order for an individual to hav. (shrink)

Amidst concerns about unethical practice in the business world, this book focuses on moral human agency in 'strategy as practice'.

We propose a revised set of moral dilemmas for studies on moral judgment. We selected a total of 46 moral dilemmas available in the literature and fine-tuned them in terms of four conceptual factors (Personal Force, Benefit Recipient, Evitability and Intention) and methodological aspects of the dilemma formulation (word count, expression style, question formats) that have been shown to influence moral judgment. Second, we obtained normative codings of arousal and valence for each dilemma showing that emotional arousal in response to (...) moral dilemmas depends crucially on the factors Personal Force, Benefit Recipient, and Intentionality. Third, we validated the dilemma set confirming that people's moral judgment is sensitive to all four conceptual factors, and to their interactions. Results are discussed in the context of this field of research, outlining also the relevance of our RT effects for the Dual Process account of moral judgment. Finally, we suggest tentative theoretical avenues for future testing, particularly stressing the importance of the factor Intentionality in moral judgment. Additionally, due to the importance of cross-cultural studies in the quest for universals in human moral cognition, we provide the new set dilemmas in six languages (English, French, German, Spanish, Catalan and Danish). The norming values provided here refer to the Spanish dilemma set. (shrink)