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)

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)

Purpose This study aims to explore the complexities of methodological, ethical and emotional challenges of studying sensitive and vulnerable communities online from the perspective of simultaneously being a researcher and a research subject. The point of departure for these explorations consists of the author’s past and ongoing studies of the role and use of a closed grief support group on Facebook for bereaved parents – a community of which the author is a member. The aim is not to provide ready (...) solutions for “how to do ethics,” but rather to contribute to the collective and ongoing work initiated by the Association of Internet Researchers, among others, and to recognize the necessity of ethical pluralism, cross-cultural awareness and an interdisciplinary approach. Design/methodology/approach This is an explorative study, drawing on an ethnographic case study. The case serves as a point of departure for discussing the complexities of methodological, ethical and emotional challenges of studying sensitive and vulnerable communities online from the perspective of simultaneously being a researcher and a research subject. Findings Being a researcher and a research subject rolled into one, as it were, presents both opportunities and challenges. To conduct responsible research from both these perspectives pose high demands on the researchers’ ethical as well as emotional capacities and responsibilities. Hopes and expectancies of the community under study might put the researcher into a dilemma, ethical aspects of anonymity and informed consent might have to be reconsidered as well as emotional challenges of engaging in and with sensitive research, all of which makes for a complex balancing act. Ethics and methods are inextricably intertwined, so are the emotional challenges of conducting sensitive research intermingled. Studying vulnerable individuals and closed communities online highlights the necessity for case and context sensitive research and for flexibility, adaptivity and mindfulness of the researcher. It also highlights the importance of discussing and questioning theoretical, methodological and ethical developments for studying everyday life practices online. Originality/value The challenges encountered in this case study contribute to the experientially grounded approach to research ethics emphasized in AoIR’s ethics guidelines. This case offers an opportunity to explore and discuss complex issues arising from the researcher’s insider position in a closed group devoted to the sensitive topic of supporting bereaved parents. Further, it highlights the necessity for research to be case and context sensitive as well as for the researcher and the research design to be flexible and adaptive. Research on vulnerable communities also heightens the demands of ethical responsibility of the researcher and the research process. (shrink)

An interesting consequence of the structuralist theory of truth approximation, as developed in my From Instrumentalism to Constructive Realism , henceforth ICR, concerns so-called ‘inference to the best explanation’ . It will be argued that this popular rule among scientific realists can better be replaced by, various kinds of, ‘inference to the best theory’.

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)

Abstract -/- This overview of Michael Riffaterre’s work in poetics aims to trace the development of the key concepts of Semiotics of Poetry (R.1978), from his initial ‘stylistics’ phase, moving through the subsequent New Criticism and Piagetian structuralist phases. There is an account of the debate with Jakobson and Lévi-Strauss over a valid method for interpreting a Baudelaire sonnet, in the course of which several elements of the mature theory are developed. These are treated in detail in the following section (...) on R.1978, and demonstrated in the analysis of a Gautier poem. The concept of the ‘matrix’ is seen to require modification, as it is sugggested that a single matrix cannot account for the complexity of the underlying propositional structure of the text. After touching on Riffaterre's work on narrative, the author’s work on the perception-changing effect of the modernist text is briefly discussed. (shrink)