Moral distress in paediatric oncology: Contributing factors and group differences

Abstract

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.

Important situations that capture moral distress in paediatric oncology

“…In accordance with other studies on moral distress in paediatric settings, the overall moral distress intensity was comparatively higher than the frequency [9,23]. Also in the results from the 21 items of the paediatric MDS-R in this Swedish study, the situations were experienced as disturbing (3.3), but not that common (1.0) [11]. In accordance with the results of the cognitive interviews, the five added situations were more common, because the frequency of the five items together was higher (1.46) than of the 21 items.…”

“…The five items were added in a previous study because participants in cognitive interviews considered them to be important [14]. The appropriateness of adding items to validated instruments could be questioned as it, for example, makes it difficult to compare the total MDS-R scores with other studies, and for that reason the items were initially not included in the previously published results from this national study and in the analysis of the Swedish total MDS-R scores [11]. However, to maintain the content validity also validated instruments need to be adapted both to the specific context and to changes over time [22].…”

“…A recent study found no significant differences between the total moral distress scores of nurses and MDs [10]. However, in a multi-professional study in Swedish paediatric oncology, registered nurses (RNs) rated significantly higher frequencies and higher total moral distress than MDs and nursing assistants (NAs) [11]. By understanding the causes of moral distress, interventions can be planned to help HCPs handle moral distress [1].…”

The ethical climate in paediatric oncology—A national cross‐sectional survey of health‐care personnel

“…19 This could also explain why, in a Swedish paediatric oncology study, MDs had a significantly lower total moral distress score compared with RNs. 20 The only significant difference identified between years of experience was that NAs with less than 5 years of experience scored higher on the item on "guidelines help me" than NAs with more experience.…”

“…Moreover, support from colleagues has been identified as a main contributory factor for MDs' resilience . This could also explain why, in a Swedish paediatric oncology study, MDs had a significantly lower total moral distress score compared with RNs …”