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)

The concept of moral distress comes from nursing ethics, and was initially defined as ‘…when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action’. There is a large body of literature associated with moral distress, yet multiple definitions now exist, significantly limiting its usefulness. We undertook a systematic review of the argument-based bioethics literature on this topic as the basis for a critical appraisal, identifying 55 papers for analysis. (...) We found that moral distress is most frequently framed around individual experiences of distress in relation to local practices and constraints, and understood in terms of power relations and workplace hierarchies. This understanding is directly derived from, and often still seen as specific to, nursing. Frequently the perspective of the morally distressed individual is privileged. Understandings of moral distress have evolved towards an ‘occupational health approach’, with the assumption that moral distress should be measured and prevented. Counter-perspectives were identified, highlighting conceptual problems. Based on our review, we propose a redefinition of moral distress: ‘Ethical unease or disquiet resulting from a situation where a clinician believes they have contributed to avoidable patient or community harm through their involvement in an action, inaction or decision that conflicts with their own values’. This definition is specific enough for research use, anchored in clinicians’ professional responsibilities and concerns about harms to patients, framed relationally rather than hierarchically, and amenable to multiple perspectives on any given morally distressing situation. (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)

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)

BackgroundMoral distress is a problem and negative experience among health-care professionals. Various instruments have been developed to measure the level and underlying reasons for experienced moral distress. The moral distress thermometer (MDT) is a single-tool instrument to capture the level of moral distress experienced in real-time.AimThe aim of this study was to translate the MDT and adapt it to the Swedish cultural context.Research designThe first part of this study concerns the translation of MDT to the Swedish context, and the second (...) part the psychometric testing of the Swedish version.Participants and research context89 healthcare professionals working at a hospital in northern Sweden participated. Convergent validity was tested between MDT and Measure of Moral Distress-Healthcare Professionals (MMD-HP), and construct validity was tested by comparing MDT scores among healthcare professionals. MDT was compared with responses to the final questions in MMD-HP. One-way ANOVA, Welch’s ANOVA, Games–Howell post-hoc test and Pearson’s correlation analysis were done.Ethical considerationsThe study was approved by the Swedish Ethics Review Authority (dnr 2020-04120) in accordance with Helsinki Declaration.ResultsThe translated Swedish version of MDT was described as relevant to capture the experience of moral distress. The mean value for MDT was 2.26, with a median of 2 and a mode value of 0. The result showed moderate correlations between the MDT and MMD-HP total scores. There was a significant difference when comparing MDT and healthcare professionals who had never considered leaving their present position with those who had left and those who had considered leaving but had not done so, with the latter assessing significantly higher moral distress.ConclusionThe MDT is an easily available instrument useful as an extension to MMD-HP to measure the real-time experience of moral distress among healthcare professionals in a Swedish context. (shrink)

Background Moral distress appears when a healthcare professional is not able to carry out actions in accordance with their professional ethical standards. The Moral Distress Scale-Revised is the most widely used to assess levels of moral distress, but it is not validated in Spanish. The aim of the study is to validate the Spanish version of the Moral Distress Scale – utilised within a sample of Spanish healthcare professionals treating COVID–19 patients. Methods The original (english) and the portuguese and french (...) versions of the scale were translated into spanish by native or bilingual researchers and reviewed by an academic expert in ethics and moral philosophy as well as by a clinical expert. Research design: Descriptive cross-sectional study carried out using a self-reporting online survey. The data was collected between June- November 2020. A total of 661 professionals responded to the survey (N = 2873). Participants: healthcare professionals with more than two weeks of experience treating COVID–19 patients at the end of their life and working in the public sector of the Balearic Islands Health Service (Spain). Analyses included descriptive statistics, competitive confirmatory factor analysis, evidence on criterion-related validity and estimates of reliability. The study was approved by the Research Ethics Committee at the University of Balearic Islands. Results An unidimensional model in which a general factor of moral distress explained by 11 items of the Spanish version of the MDS–R scale was an adequate representation of the data: χ 2 (44) = 113.492 (p 0.001); Comparative Fit Index = 0.965; Root Mean Square Error of Approximation = 0.079[0.062,0.097]; and Standarized Root Mean-Square = 0.037. Evidence of reliability was excellent: Cronbach’s alpha = 0.886 and McDonald’s omega = 0.910. Moral distress was related to discipline, with nurses having statistically significant higher levels than physicians. Additionally, moral distress successfully predicted professional quality of life, with higher levels of moral distress being related to poorer quality of life. Conclusions The Spanish version of Moral Distress Scale–Revised can be used as a reliable and valid measurement tool for the evaluation of moral distress experienced by health professionals. This tool will be highly useful for managers and applicable to a variety of healthcare professionals and settings. (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)