Experiences of ethical concerns and dealing with these in caring for children with cancer evoked strong feelings and moral perplexity among nursing staff. The study raises a challenging question: How can conflicting perspectives, lack of interprofessional consideration, and obstacles related to parents' involvement be "turned around," that is, contribute to a holistic perspective of ethics in cancer care of children?
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.
The two-thirds of participants who had a negative/neutral perception of the possibility to practice ethically good care are at risk of developing moral stress. Clinical ethics support needs to be implemented in care where important values are at stake.
The procedures for structuring clinical ethics case reflections in a childhood cancer care setting are presented, including an eight-step model. Four notable characteristics of the procedures are: members of the inter-professional health care team, not external experts, taking a leading role in the reflections; patients or relatives not being directly involved; the model explicitly addressing values and moral principles instead of focussing exclusively on the interests of involved parties; using a case-based (inductive) rather than principle-based (deductive) method. By discusing the advantages and disadvantages of the proposed procedures, our paper aims to contribute to the literature on models and procedures for ethical analysis that can be used in clinical settings. It is suggested that our proposed procedures have some advantageous features when it comes to promoting health care staff’s learning to structure their thinking about ethical issues.
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