Important situations that capture moral distress in paediatric oncology

Abstract

Background: The paediatric Moral Distress Scale-Revised (MDS-R) 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 (HCPs) in paediatric oncology. Methods: 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 (n = 278) at all six Swedish paediatric oncology centres participated (> 89%). The Regional Ethical Review Board had no objections. Consent was assumed when the survey was returned. Results: Nursing assistants (NAs) reported higher intensity and lower frequency on all added items; registered nurses (RNs) reported a higher frequency on item 22-25; medical doctors (MDs) 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.Conclusion: 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.

Ethical climate and moral distress in paediatric oncology nursing

“…1 Physical restraint of small children is perceived to be quite common and distressing. 41 According to the nurses in our study and earlier findings from Sweden, 15 even older children resist treatments quite often, but compared to the Swedish results, nurses in Finland did not find these situations quite as disturbing as nurses in Sweden did. This item was added in the Swedish MDS-R, 15 and the high scores show its relevance in paediatric nursing studies.…”

“…41 According to the nurses in our study and earlier findings from Sweden, 15 even older children resist treatments quite often, but compared to the Swedish results, nurses in Finland did not find these situations quite as disturbing as nurses in Sweden did. This item was added in the Swedish MDS-R, 15 and the high scores show its relevance in paediatric nursing studies. Although our results do not reveal reasons for resisting and unwillingness among school-aged children, Bray et al 42 have shown that children value detailed information about the planed procedure and the individual coping strategies they can use.…”

“…In this study, as a part of the multi-centre project in the Nordic countries, 10,14,15 we aimed to explore nurses’ experiences of the ethical climate and moral distress in Finnish paediatric oncology care. Our research questions were as follows: What are the nurses’ perceptions of the ethical climate at their workplace? What are the nurses’ perceptions of moral distress in different situations? Do perceptions of moral distress differ between nurses according to work experience in paediatric healthcare and to level of education? Are perceptions of the ethical climate correlated with levels of moral distress? …”

“…The items describe clinical situations and internal and external constraints 20 that healthcare providers may experience as disturbing: end-of-life care and quality of life, poor communication, staffing and material resources, hierarchies of decision-making and witnessing unethical behaviour. 21 The second and the last author of this study coordinated the process of translating and adapting the Swedish MDS-R et al, 15,22 with permission from Dr AB Hamric (email, 6 October 2014), for multi-professional use in paediatric oncology care. The Swedish MDS-R consists of 26 items whereof each is rated twice: first, how disturbing (intensity) the situation is assumed to be, and second, how often (frequency) the situation occurs.…”

Holding the frontline: a cross-sectional survey of emergency department staff well-being and psychological distress in the course of the COVID-19 outbreak

“…In addition, participants were asked if they experienced more, less or the same level of moral distress since the outbreak of the COVID-19 outbreak. Moral distress has been defined as a consequence when someone knows what is ethically right but for different reasons cannot act accordingly [ 22 , 23 ].…”