A cross‐sectional survey of moral distress and ethical climate – Situations in paediatric oncology care that involve children’s voices

Abstract Aim To assess experiences of morally distressing situations and perceptions of ethical climate in paediatric oncology care, with a focus on situations that involve children's voices. Design Cross‐sectional survey. Methods Registered Nurses at all four paediatric oncology centres in Denmark were asked to complete a web‐based questionnaire with Danish translations of the Swedish Moral Distress Scale‐Revised (MDS‐R) and the Swedish Hospital Ethical Climate Survey‐Shortened (HECS‐S). Data analysis included descriptive statistics and non‐parametric correlation tests. Results Nurses (n = 65) perceived morally distressing situations as rather uncommon, except for those that involved shortage of time, poor continuity of care and unsafe staffing levels. Most nurses (83%) found it disturbing to perform procedures on school‐aged children against their will, and 20% reported that they do this often. Perceptions of ethical climate were positive and healthcare professionals were perceived to be attentive to children's wishes.

care situations when one does not carry out an action one considers as the ethically right thing to do (Boyle & Bush, 2018). Unattended moral distress can lead to burnout (Neumann et al., 2018), intention to leave (Colville et al., 2019) and to diminished quality of patient care (Henrich et al., 2017). Prior research has identified futile treatments and continuation of care not in the child's best interest as common causes of moral distress (Lazzarin et al., 2012). Many nurses also experience unsafe staffing levels and poor communication as morally distressing . Institutional constrains that hinder healthcare professionals from acting in accordance with their moral values have aroused an interest to study the relationship between moral distress and ethical climate (Morley et al., 2019). Positive perceptions of ethical climate have been associated with less frequent experiences of moral distress (Silen et al., 2011;Ventovaara et al., 2021). Ethical climate has been described as employees' perceptions of ethically right ways of behaviour (Victor & Cullen, 1987), and as organizational practices on how ethical issues are discussed and decided (Olson, 1998). Prior studies have shown that ethical climate impacts the (un)ethical behaviour of employees (Treviño et al., 2014). When facing an ethical dilemma and having to decide about it, most adults seek external guidance from significant others, leaders, peers, rules and guidelines (Treviño et al., 2014). In paediatrics, the decision-making should also be guided by an integrated child and family-centred care, where the child's interests are primary and the parents contribute with their knowledge of their child and of the family's goals and values (Moynihan et al., 2021). Previous research has shown favourable impressions of ethical climates in healthcare (Koskenvuori et al., 2019), but paediatric healthcare professionals have also expressed difficulties in providing ethically good care (Bartholdson et al., 2016).

Many clinical situations in paediatric healthcare involve ethical
dilemmas about what action benefits the child most (Bartholdson et al., 2015). Sometimes, the action that raises doubts about the child's best interest also involves overriding his/her wishes.
Children have not yet achieved true autonomy, but according to the United Nations Convention on the Rights of the Child, they do have a right to participate in decisions about matters that affect them (Office of the United Nations High Commissioner for Human Rights [OHCHR], 1989). However, this right only applies to some extent, depending on the child's level of maturity and decisionmaking capacity and thus, many healthcare decisions are made by children's proxy voices, parents and healthcare professionals.
Children themselves are not always encouraged to participate in decision-making processes (Quaye et al., 2019) and concerns about family-centred care silencing children's voices have been raised (Davies et al., 2019). Even when children do express their wishes, they can be easily overpowered when in conflict with medical needs, for example when forced immobilization is used in young, non-cooperative children during medical procedures. While physical restraint can be in the child's best interest in life-threatening situations, the ethical justification becomes more blurred when applied in everyday practice.
Forced procedures cause ethical concerns for paediatric nurses, especially when the procedure increases the suffering of the child in situations with a little hope of cure or if the nurse disagrees with the necessity of the procedure (Bartholdson et al., 2015). Another ethical problem related to paediatric decision-making occurs when young patients are not allowed to hear the truth about their illness (Bartholdson et al., 2015) or their imminent death (Hopia & Heino-Tolonen, 2019). The patient advocacy is an essential part of the paediatric nurses' role and situations that make it difficult to adhere to the wishes of the children, can be morally distressing. Considering the many ethical dilemmas and differing perspectives in paediatric oncology care, moral distress and ethical climate should be studied in further detail.
So far, most research on moral distress and ethical climate has been conducted in adult care settings, and in paediatric settings mainly among intensive care nurses (Karakachian & Colbert, 2019;Koskenvuori et al., 2019;Lamiani et al., 2017). Lack of research on moral distress and ethical climate in paediatric oncology care led to a research project investigating these topics in the Nordic countries of Sweden, Finland, Denmark, Norway and Iceland (af Sandeberg et al., 2020;Pergert, Bartholdson, Blomgren, et al., 2019;Ventovaara et al., 2021). As a part of this project, this study was conducted in paediatric oncology centres in Denmark.
The aim was to assess nurses' experiences of morally distressing situations and to investigate perceptions of ethical climate. The focus was on situations related to paediatric decision-making that involve children's voices. The study instruments included three child-specific items of particular interest. These assess nurses' experiences of limited truth-telling despite an active request from a child, performing procedures against children's will and nurses' perceptions of how often children's wishes are taken into account. As the prior studies from Sweden and Finland have indicated that nurses often struggle with busy work-shifts Ventovaara et al., 2021), an additional interest was to examine if shortage of time and unsafe staffing levels are related to the situations that involve children's voices.  Each item is assessed twice: firstly, by its level of disturbance ('how would this situation affect you?') and secondly, by its frequency ('how often have you experienced this situation?'). Both assessments are scored on a scale from 0 (not at all/never) to 4 (very negatively/ very often). Higher scores imply higher levels of moral distress.

| The questionnaire
The Danish Hospital Ethical Climate Survey -shortenedconsists of 18 items that describe conditions for ethical practices and relations between co-workers, the hospital, the management and patients.
This study focused on the item describing relations to patients, which reads 'patient's wishes are taken into account'. All items are scored on a scale from 1 (almost never) to 5 (almost always). Higher scores imply more positive perceptions of the ethical climate.

| Data collection
The data collection was conducted during December 2019 and March 2020. All 137 nurses and 28 physicians who were working in direct patient care at the four paediatric oncology centres in Denmark during the data collection period were invited to participate. This study presents exclusively nurses' responses and the results from the physicians will be reported elsewhere. Data were collected by using a web-based questionnaire in the Artologik Survey & Report, Version 4.3 (Artisan Global Media). Two of the centres chose to use a public web link to the questionnaire. A contact person at these centres received the link to the questionnaire and forwarded it, together with an invitation to participate, to the potential participants who then could access the survey by clicking on the link. The public link did not allow the participants to save their answers and to continue the survey at a later time. Two other centres chose personal links to the questionnaire, meaning that all links were individual and unique for each potential participant. The use of private links allowed the participants to save their answers and to complete the questionnaire at a later time.
Three reminders were sent in order to enhance the response rates.

| Analysis
The IBM SPSS Statistics 25 was used to analyse the data. The instruments with more than 10 percent missing answers were excluded from the analysis. To describe central tendencies, a participant mean value was calculated for each scale. The Spearman's Correlation was used to examine the strength of association between items and between scales. Counts and percentages were calculated to examine distributions of the item scores. The 5-point instrument scales were then dichotomized into mutually exclusive categories. In the present analysis, the middle option was regarded as neutral and the two options above it were considered to present positive perceptions of ethical climate (scores >3) and frequent/disturbing experiences of moral distress (scores >2). The major benefit of dichotomization is that it very much simplifies the presentation of the results (Farrington & Loeber, 2000). A Cronbach's alpha coefficient above 0.70 was taken as indication of an acceptable internal consistency (Mackridge & Rowe, 2018). In correlation analysis, a p < .05 was regarded as statistically significant.

| Ethics
The instruments were used with permission from the developers (AB At a national paediatric oncology meeting, the third author provided oral information about the study to the nurses, the physicians and the managers of the four paediatric oncology centres. After the meeting, an invitation letter including information about the study was sent by email to the managers at the four centres, and all consented. The first page of the survey included information about confidentiality, that it was voluntary to participate, and the General Data Protection Regulations. The participants were asked to confirm that they had read and agreed with the terms and conditions, and only participants who did so, could answer the questionnaire.
One participant was excluded from the Moral Distress analysis because more than 10% of the items were left unanswered. Table 1 provides an overview of the demographic characteristics of the participants.

| Moral distress
The situations described in the Danish MDS-R were found to be highly disturbing (mean 3.21; SD 0.46) but most situations were reported to occur quite rarely, the mean frequency of all 26 items being 1.23 (SD 0.49) on a scale of 0 to 4. Table 2, the three situations that were reported to occur frequently by the highest number of nurses, reflected shortage of time, impaired care quality due to poor continuity of care and unsafe staffing levels.

As seen in
'Perform painful/unpleasant procedures on school-aged children who resist such treatment'was perceived to be very disturbing by most nurses. Every fifth nurse frequently experienced this situation at work (Table 2).
Most nurses found the situation 'follow family's request not to talk about death with a dying child who asks about dying' very disturbing. This situation ranked as the most disturbing one out of the 26 situations and six nurses reported they frequently experienced it (Table 2).

| Ethical climate
Rated on a scale of 1 to 5, the ethical climate scale displayed a mean of 3.93 (SD 0.58). The majority of the nurses had selected a positive option (>3) in 15 out of 18 statements (Table 3). According to the nurses' perceptions parents' wishes were taken into account more often than children's wishes.

| Correlation between items
A weak, positive correlation was found between the reported fre-

| Correlation between moral distress and ethical climate
Perceptions of ethical climate were inversely correlated with the frequencies of morally distressing situations (r = −0.523, n = 65, p < .001). No correlation was found between the ethical climate and the disturbance levels of morally distressing situations.

| DISCUSS ION
The purpose of this study was to explore nurses' experiences of

TA B L E 2
The Danish MDS-R items and the proportion of nurses who selected an option above the middle score (>2), suggesting frequent/disturbing experiences of moral distress. The two child-specific items are marked with †. N = 65

Disturbance n(%)
Not having time to conduct conversations with patients and families in a way you think they should be carried out 28 (43) 55 (85) See that … care suffers because of lack of continuity, with many different healthcare providers 25 (38) 52 (80) Work in a staffing situation (number/competence level) that you experience as unsafe 22 (34) 58 (89) Work with nurses … not as competent as … healthcare requires 15 (23) 55 (85) Be unable to provide best possible care … pressures from management to reduce costs 15 (23) 57 (88) † Perform painful/unpleasant procedures on school-aged children who resist such treatment 14 (22) 54 (83) Follow family's wishes… life-sustaining treatment…not in the best interest of the child 11 (17) 46 (71) Be expected to care for patients… not feel competent enough to care for 9 (14) 56 (86) Feel pressured to perform tests and treatments … unnecessary 9 (14) 37 (57) Provide care although parents have unrealistic expectations of healthcare 7 (11) 32 (49) See that the quality of patient care suffers because of poor communication within the team 7 (11) 57 (88) See inexperienced…professionals perform painful procedures… solely to improve skills 7 (11) 53 (82) † Follow family's request not to talk about death… dying child who asks about dying 6 (9) 62 (95) Continue to participate in life-sustaining treatment of a dying child because no one has decided to end that treatment 6 (9) 53 (82) Provide inadequate care…not relieve…suffering…physician afraid…will lead to death 6 (9) 57 (88) Work with a physician… incompetent in providing healthcare 5 (8) 61 (94) See… professionals give 'false hope' to parents 5 (8) 55 (85) Avoid reporting… discover that a physician or a nurse has made a medical error 5 (8) 45 (69) Not to talk about death with a dying child although you think it is necessary 4 (6) 56 (86) Take life-saving actions… only prolong dying 4 (6) 50 (77) Decide on care/treatment when you are uncertain about what is right 3 (5) 45 (69) Shut eyes to that parents have not received… information… to give their consent to health care… 3 (5) 51 (78) Take no action about an ethical issue…because the involved…professional or management requests… 3 (5) 55 (85) Follow the family's wishes for the child's care despite…you disagree…afraid of being reported 2 (3) 52 (80) Follow physician's request not to discuss… prognosis with parents 2 (3) 49 (75) Give an increased dose of sedatives/opiates… believe… hasten death 1 (2) 27 (42) et al., 2021), nurses in this study did not experience this situation very often. Due to the way the situation is described in the MDS-R, it cannot be concluded whether parents only rarely asked nurses to keep silent about death or if the nurses chose not to obey such requests. The astonishing survival rates in high-income countries (Erdmann et al., 2021), however, support the idea of limited exposure to the described situation in general.
Procedures against children's will is a common ethical challenge in paediatric healthcare (Lombart et al., 2020)  Nurses have described forced procedures as an infringement on children's autonomy (Bartholdson et al., 2015), and therefore it can be assumed that it could be more morally distressing to use restraint on school-aged children than when applying it to toddlers.
Considering the number of procedures that children with cancer must undergo, it is important to gain children's cooperation and to help them to cope with distressing situations. The study by Kleye et al. (2021) emphasizes the importance of listening to children's voices as they already may have their own strategies for mastering procedures. Further studies among school-aged children could shed light on their experiences in more detail and help nurses to better prepare children for procedures, which in turn could diminish moral distress associated with these situations.
In line with previous findings Sauerland et al., 2015), the most common morally distressing situations appeared to be related to shortage of time,  (Koskenvuori et al., 2019). According to nurses' perceptions, parents' wishes were slightly more often taken into consideration than children's wishes. Considering that many children diagnosed with cancer in Denmark are under 4 years or age (Grabas et al., 2020) and those parents have the authority to act as proxy decision makers, this finding is not unexpected. This outcome is in line with Swedish studies (Bartholdson et al., 2016;Pergert, Bartholdson, Blomgren, et al., 2019) but it differs from the results from a Finnish study that suggested equal consideration to parents' and children's wishes (Ventovaara et al., 2021). This inconsistency may partly be due to instrumental errors in surveying, as these two response options are not mutually exclusive in a family-centred model of care where children's and parents' wishes often are intertwined. It is important to bear in mind that listening to children's voices does not necessarily mean granting children autonomy in decision-making, but rather recognizing their integrity and allowing them to express their views and feelings.

TA B L E 3
The Danish HECS-S items and the proportion of nurses who had selected an option above the middle score (>3), suggesting positive perceptions of ethical climate. The child-specific item is marked with †. N = 66

Scores >3 n(%)
Abbreviated items Co-workers listen 63 (95) Competent co-workers 60 (91) Parents' wishes 60 (91) Physicians and nurses trust 58 (88) † Patients' wishes 51 (77) Openness asking questions, learning 51 (77) Manager I trust 51 (77) Physicians and nurses respect each other's opinions 51 (77) Hospital's values shared 49 (74) I can practise care as it should be 44 (67) Feelings and values taken into account 42 (64) Immediate manager helps 38 (58) Physicians ask nurses for their opinions 38 (58) Ethical problems identified 38 (58) Immediate manager helps my co-workers 34 (52) Dealing with ethical problems 33 (50) Hospital policies help 29 (44) Conflicts openly dealt with 27 (41) In accordance with previous studies (Silen et al., 2011;Ventovaara et al., 2021), the present findings link perceptions of positive ethical climate with less frequent experiences of morally distressing situations. Although cross-sectional studies cannot explain the causality, it can be assumed that while it is important to mitigate the experiences of moral distress, efforts should also be made to enhance the communication, the ways of dealing with ethical issues and other aspects of ethical climate.

| Clinical implications
The combination of our current findings and previous empirical research calls for an ethical climate that inspires nurses to actively listen to children. Acknowledging children's voices could prevent some of the morally distressing situations, but as it can be quite timeconsuming, it can be difficult to adhere to if nurses already struggle with time constraints. The challenge now is to improve nursing workloads and staffing issues. Silen et al. (2012) suggest managers to give their support by staffing up when there are heavy workloads.
In paediatric nursing this might involve taking one step further, as optimal staffing levels are not only about the nurse-patient ratios.
Considering the long cancer treatments and frequent hospitalizations, a continuity of care is warranted. Higher baseline staffing could reduce moral distress, and even grant time for a child-friendly approach, assuring that children's voices would be heard even in peak hours.

| LI M ITATI O N S
Although this was a multi-centre study, the number of potential study participants was limited to start with, and the low response rate makes the generalizability uncertain, so all results must be interpreted with caution. Furthermore, the modest sample size discouraged from some statistical tests such as group comparisons.
The ethical climate is a characteristic of a workplace, and it might have been more accurate to compare the perceptions within and between centres. However, due to the small number of participants in two of the centres this would have jeopardized confidentiality.

| CON CLUS ION
The results of this study showed that shortage of time for having conversations is a common cause of moral distress among paediatric oncology nurses. Paediatric nurses are attentive, even if they are slightly more likely to listen to parents' than children's views.
Although parents' opinions weight more in medical decisions, children's views should not be overlooked. Ensuring resilient baseline staffing levels and maintaining continuity of care could prevent morally distressing situations and nourish an ethical climate where children are encouraged to voice their views.

ACK N OWLED G EM ENTS
A special thank you is extended to the healthcare professionals who answered the questionnaire. We would like to thank the Danish members of the NOPHO/NOBOS Working Group on Ethics, especially Astrid Marie Sehested who assisted with one of the translations of the questionnaire. We also thank Elisabet Tiselius (interpreter in Swedish, English and Danish) and Johanna Granhagen Jungner who acted as moderator and observer in the expert review board synthesizing the two translations. We would also like to acknowledge the Doctoral School in Health Care Sciences at Karolinska Institutet and the Swedish Childhood Cancer Fund.

CO N FLI C T O F I NTE R E S T
The authors declare no conflict of interest. Writing -review and editing.

DATA AVA I L A B I L I T Y S TAT E M E N T
Data available on request from the authors.