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)

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)

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)

Background:Providing oncological care to children is demanding and ethical issues concerning what is best for the child can contribute to moral distress.Objectives:To explore healthcare professionals’ experiences of situations that generate moral distress in Swedish paediatric oncology.Research design:In this national study, data collection was conducted using the Swedish Moral Distress Scale-Revised. The data analysis included descriptive statistics and non-parametric analysis of differences between groups.Participants and research context:Healthcare professionals at all paediatric oncology centres in Sweden were invited to participate. A total of (...) 278 healthcare professionals participated. The response rate was 89%.Ethical considerations:In its advisory statement, the Regional Ethical Review Board decided that the study was of such a nature that the legislation concerning ethical reviews was not applicable. All participants received written information about the aim of the study and confidentiality. Participants demonstrated their consent by returning the survey.Findings:The two situations with the highest moral distress scores concerned lack of competence and continuity of personnel. All professional groups reported high levels of disturbance. Nurses rated significantly higher frequencies and higher total Moral Distress Scale scores compared to medical doctors and nursing assistants.Discussion:Lack of competence and continuity, as the two most morally distressing situations, confirms the findings of studies from other countries, where inadequate staffing was reported as being among the top five morally distressing situations. The levels of total Moral Distress Scale scores were more similar to those reported in intensive care units than in other paediatric care settings.Conclusion:The two most morally distressing situations, lack of competence and continuity, are both organisational in nature. Thus, clinical ethics support services need to be combined with organisational improvements in order to reduce moral distress, thereby maintaining job satisfaction, preventing a high turnover of staff and ensuring the quality of care. (shrink)

The Hospital Ethical Climate Survey was developed in the USA and later shortened. HECS has previously been translated into Swedish and the aim of this study was to describe a process of translating and culturally adapting HECS-S and to develop a Swedish multi-professional version, relevant for paediatrics. Another aim was to describe decisions about retaining versus modifying the questionnaire in order to keep the Swedish version as close as possible to the original while achieving a good functional level and trustworthiness. (...) In HECS-S, the respondents are asked to indicate the veracity of statements. In HECS and HECS-S the labels of the scale range from ‘almost never true’ to ‘almost always true’; while the Swedish HECS labels range from ‘never’ to ‘always’. The procedure of translating and culturally adapting the Swedish version followed the scientific structure of guidelines. Three focus group interviews and three cognitive interviews were conducted with healthcare professionals. Furthermore, descriptive data were used from a previous study with healthcare professionals, employing a modified Swedish HECS. Decisions on retaining or modifying items were made in a review group. The Swedish HECS-S consists of 21 items including all 14 items from HECS-S and items added to develop a multi-professional version, relevant for paediatrics. The descriptive data showed that few respondents selected ‘never’ and ‘always’. To obtain a more even distribution of responses and keep Swedish HECS-S close to HECS-S, the original labels were retained. Linguistic adjustments were made to retain the intended meaning of the original items. The word ‘respect’ was used in HECS-S with two different meanings and was replaced in one of these because participants were concerned that respecting patients’ wishes implied always complying with them. The process of developing a Swedish HECS-S included decisions on whether to retain or modify. Only minor adjustments were needed to achieve a good functional level and trustworthiness although some items needed to be added. Adjustments made could be used to also improve the English HECS-S. The results shed further light on the need to continuously evaluate even validated instruments and adapt them before use. (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)

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)

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)

Teaching philosophy at pre-tertiary levels faces some fundamental challenges, including the misconception that philosophy is an abstract and esoteric field of study. This mind-set hinders teaching philosophy at all levels, particularly in the pre-tertiary stage. Nonetheless, philosophy holds significant cognitive values when taught to children. Therefore, it is crucial to find ways to simplify the process of learning philosophy, especially when children are in their formative years and have a greater capacity for learning. Children possess qualities necessary for engaging with (...) philosophy, such as curiosity. Leveraging these qualities makes it less daunting to introduce philosophy at pre-tertiary levels. Additionally, children have a visual and imaginative mind, enabling them to quickly grasp ideas and concepts through the use of modern technology. Integrating pictures, movies, and cartoons into philosophy education can enhance comprehension. For example, the movie “Divergent” contains philosophical themes that aid in understanding Plato’s concept of societal stratification. This article seeks to compare “Divergent” with Plato’s “The Republic” in terms of society’s hierarchical structure. Its objective is to demonstrate the value of movies and visual aids in teaching and learning philosophy, while also advocating for sensitivity to the underlying class dynamics in contemporary society. (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)