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Ethics

Self-study CPD activity 2021

Activity reference number:

PE6 (21) 2025

Topic

Ethics

Article

Important situations that capture moral distress in paediatric oncology

Profession(s)

Medical Practitioner, Radiographer, Psychometrist

This activity is approved for TWO (2) Continuing Education Units (CEU’s) in professional ethics

RESEARCH ARTICLE Open Access

Important situations that capture moraldistress in paediatric oncologyMargareta af Sandeberg1,2* , Cecilia Bartholdson1,3 and Pernilla Pergert1,2

Abstract

Background: The paediatric Moral Distress Scale-Revised (MDS-R) was previously translated and adapted toSwedish 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’ unrealisticexpectations, 24) Not to talk about death with a dying child, 25) To perform painful procedures, 26) To decide ontreatment/care when uncertain. The aim was to explore experiences of moral distress in the five added situations inthe 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, wereused. Descriptive statistics, non-parametric analysis of differences between professions and a MDS-R score for eachitem 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 hadno objections. Consent was assumed when the survey was returned.

Results: Nursing assistants (NAs) reported higher intensity and lower frequency on all added items; registerednurses (RNs) reported a higher frequency on item 22–25; medical doctors (MDs) reported higher MDS-R score onitem 26. On item 22, intensity was moderate for RNs and MDs and high for NAs, and frequency was high amongall. Item 22, had the second highest MDS-R score of all 26 for all professional groups. On item 23, the level ofdisturbance was low but it occurred often. The 26-item version showed good internal consistency for the overallsample and for all professional groups. However, item 22 and 24 could be viewed as redundant to two of theoriginal 21.

Conclusion: In accordance with other studies, the intensity was higher than the frequency, however, the frequencyof the added items was higher than of the original items. In line with previous research, item 22 and 23 areimportant elements of moral distress. RNs experience the situations more often while NAs find them moredisturbing. The results indicate that the added items are important in capturing moral distress in paediatriconcology.

Keywords: Moral distress, Paediatric oncology, Healthcare professionals, Registered nurses, Medical doctors, Nursingassistants, Hospital settings

BackgroundMoral distress is an experience shared by all healthcareprofessionals (HCPs), although different professions havedifferent perspectives on it and experiences of it [1]. In

previous studies, moral distress has been shown to be re-lated to burnout, low job-satisfaction and high turnoverof HCPs [2, 3]. According to an analysis of the theory ofmoral distress, the main problem is, apart from thenegative effects on HCPs, the impact on the quality ofpatient care [4].Moral distress has been defined as a consequence when

someone knows what is ethically right but for different rea-sons cannot act accordingly [5, 6]. According to O’Donnellet al. [7] moral distress also includes a consequence of a

© The Author(s). 2020 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

* Correspondence: [email protected] of Women’s and Children’s Health, Childhood Cancer ResearchUnit, Karolinska Institutet, Tomtebodavägen 18A, SE-171 77 Stockholm,Sweden2Paediatric Haematology and Oncology, Children’s and Women’s HealthCare, Karolinska University Hospital, Stockholm, SwedenFull list of author information is available at the end of the article

af Sandeberg et al. BMC Medical Ethics (2020) 21:6 https://doi.org/10.1186/s12910-020-0447-x

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moral dilemma, that is a conflict of values when one has totake a decision when not knowing what is ethically right.Previous studies on differences in levels of moral distressbetween nurses and medical doctors (MDs) show contra-dictory results [8, 9]. A recent study found no significantdifferences between the total moral distress scores of nursesand MDs [10]. However, in a multi-professional study inSwedish paediatric oncology, registered nurses (RNs) ratedsignificantly higher frequencies and higher total moral dis-tress than MDs and nursing assistants (NAs) [11]. By un-derstanding the causes of moral distress, interventions canbe planned to help HCPs handle moral distress [1].The Moral Distress Scale (MDS) was developed by

Corley et al. to measure moral distress among nurses inhospital settings [12]. When revising the MDS (MDS-R)Hamric et al. [13] shortened it to include 21 items de-scribing clinical situations found to generate moral dis-tress among HCPs, and paediatric versions weredeveloped for nurses, MDs and others.When the paediatric MDS-R was translated and cul-

turally adapted to Swedish paediatric oncology in 2014–2015, the target population was HCPs (RNs, MDs andNAs) in hospital settings [14]. The aim was to keep theoriginal content as much as possible to be able to com-pare results across studies. Furthermore, the aim was tomake it clinically relevant to the paediatric oncologycontext. This is in contrast to the Measure of Moral Dis-tress for Health Care Professionals (MMD-HP) devel-oped by Epstein et al. [15] who was aiming for a moregeneric version. Epstein et al. increased the number ofitems at team-level (such as poor communication andinteraction) and system level (for example excessive re-quirements of documentation). In the process of cogni-tive debriefing of the Swedish paediatric MDS-R, twofocus group interviews and 16 individual cognitive inter-views were performed in accordance with Collins [16]with HCPs, including RNs, MDs and NAs, in paediatriconcology at University Hospitals [14]. Field notes weretaken and discussed in a review group (n = 7) with ex-pertise in paediatric oncology, ethics, translation andquestionnaire design. The situations described in the 21items in the Swedish translation of the original MDS-Rwere found to be relevant [14]. However, some adjust-ments were necessary, for example, the indicated fre-quency was found to influence how the respondentsindicated the level of disturbance (intensity), and thusthe intensity was placed before the frequency in theSwedish MDS-R. Furthermore, situations not capturedamong the original 21 items were identified resulting infive added items describing situations that all HCPs inclose patient care encounter including: 22) Lack of timefor conversations with patients/families, 23) Parents’ un-realistic expectations, 24) Not to talk about death with adying child, 25) To perform painful procedures, 26) To

decide on treatment/care when uncertain. Thus, the de-cision to add these items was based on empirical data ra-ther than theory.The aim of the present study was to explore experi-

ences of moral distress in five specific situations in theSwedish paediatric MDS-R among HCPs in Swedishpaediatric oncology. The aim is also to determine if theitems should be permanently included when measuringmoral distress in this context.Research questions:� How frequent are the situations described and are

there differences between professions?� How much do the situations described disturb the

HCPs and are there differences between professions?� What are the levels of moral distress in the

situations described and are there differencesbetween professions?

� How are the five items ranked among the 26 itemsand are there differences between professions?

MethodsStudy designThis study is part of a larger national cross-sectional sur-vey in childhood cancer care, including all six paediatriconcology centres situated at a University Hospital ineach of the six national healthcare regions (Gothenburg,Linköping, Lund, Stockholm, Umeå, and Uppsala) inSweden. This part of the study focuses on the five itemsin the Swedish paediatric MDS-R that were not includedin the original MDS-R, by Hamric et al. [13].

Data collectionManagers of the paediatric oncology centres were in-formed about the study and all the six centres partici-pated. The data collection was conducted during jointunit meetings arranged by the paediatric oncology centresand those unable to attend were, in collaboration withlocal coordinators, offered the opportunity to answer thequestionnaire afterwards. Written and oral information,about confidentiality and final reporting of results exclu-sively on a group level, was provided to all participants. Itwas also emphasized that participation was voluntary. Atotal of 309 HCPs (167 RNs, 70 MDs and 72 NAs) wereinvited to participate. The data collection included demo-graphic data (gender, profession, years in paediatrics, andpaediatric oncology centre) and the Swedish paediatricMDS-R. The Swedish paediatric MDS-R consists of 21 + 5items describing situations that could generate moral dis-tress. HCPs are asked, without any specified recall time, torate, on a 5-point (0–4) Likert scale, how much the situ-ation described would disturb them (intensity, not at all-very negatively) and how often they experienced this situ-ation (frequency, never-very often).

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Data analysisFocusing on the added items, the analysis included descrip-tive statistics: frequency, mean, median, standard deviation(SD) and range. A moral distress score (henceforth MDS-Rscore) for each item was calculated as a composite score,i.e. intensity and frequency was multiplied (range 0–16)with higher scores suggesting higher levels of moral distress.The MDS-R score was used to enable the comparison withother studies. Less than 10% missing responses were con-sidered acceptable [17]. The classification of low, moderatedand high scores were based on the percentiles of the meansof the 21 items of the Swedish paediatric MDS-R in paedi-atric oncology (Table 1).The differences in mean values of intensity, frequency,

and MDS-R score between professions were tested usingthe Mann-Whitney U test. P-values < 0.05 were consid-ered statistically significant. The internal consistency ofboth the 21-item and the 26-item versions of the Swed-ish paediatric MDS-R were calculated using Cronbach’salpha and inter-item correlations. Cronbach’s alpha≥0.80 and inter-item correlation ranging between 0.15–0.50 are suggested to show good internal consistency[18]. All statistical calculations were conducted usingStatistical Package for Social Sciences (SPSS) version22.0 (IBM SPSS Statistics, Inc., Chicago, IL).

ResultsParticipantsOf 278 participants 83% were female and 17% male. Thetotal response rate (RR) was > 89%, and the median atthe six centres was 91% (range 78–98%). The distribu-tion of HCPs was 56% RNs (RR 83,3%), 20% MDs (RR89,5%), and 24% NAs (RR 95,68%). In Sweden NAs havean upper secondary education, thus not licensed and notuniversity trained as RNs. Missing items among the fiveitems were less than 3 % (range 0.7–2.9).

Levels of moral distress related to the added itemsOn the five items together, RNs reported significantlyhigher frequency than the other two professions whileNAs reported significantly higher moral distress inten-sity and lower frequency than RNs and MDs (Table 2).NAs also reported higher moral distress intensity than

the other professions on all the five situations. All situa-tions, except item 26, were reported to have occurredmore often by RNs than the other professions (Table 3).

In the situation described in item 22 (Lack of time forconversations with patients/families), the overall moraldistress intensity was moderate and the frequency scoreswas high. RNs rated higher MDS-R score on item 22than the other two professional groups (Table 3). In thesituation described in item 23 (Parents unrealistic expec-tations), the moral distress intensity was low but it oc-curred often (high frequency). RNs rated higher MDS-Rscores on this item [19] than did the two other profes-sional groups (Table 3). In the situation described initem 24 (Not talk about death with a dying child), boththe moral distress intensity and frequency were moder-ate (Table 3). In the situation described in item 25 (Per-form painful procedures), the moral distress intensityscore was low and the frequency score was high in theentire group. The MDS-R score on this item [20] washigher for RNs than for NAs, because RNs encounteredthe situation more often. The MDS-R scores of RNs andNAs were higher than those of MDs (Table 3). In thesituation described in item 26 (Decide when uncertain),the moral distress intensity of this situation was low, andslightly lower for MDs. The frequency of this situation[21] was moderate, and slightly higher for MDs. TheMDs score was higher than those of both RNs and NAs(Table 3).

MDS-R scores and rankingIn the results from all 26 items in the Swedish paediatricMDS-R (the original 21 items and the added five items),the RNs rated the highest MDS-R scores in 19 of the 26items compared to the other professional groups (Fig. 1).The MDs rated six of the 26 items, including one of thefive, higher than RNs and NAs. Of these, three itemsgenerated levels of MDS-R scores that were similar tothose of the RNs, but clearly higher than those of theNAs. These items concerned others giving false hope toparents, giving treatment not in the best interests of thechild as well as deciding when uncertain. The NAs ratedone single item, concerning not discussing the prognosiswith parents, as slightly higher than the others.Regarding the situation described in item 22 (Lack of

time for conversations with patients/families) the MDS-R score of this situation was the second highest of the26 items in the entire group and also for each of theprofessional groups (Table 4).The situation described in item 23 (Parents unrealistic

expectations) scored as number five of the 26 items, by allHCPs. The MDS-R score on item 23, by each professionalgroup, was among the top six on the ranking list (Table 4).Even though RNs rated a higher MDS-R score than theother two professional groups, this item [19] scored loweron the ranking list for RNs, than for NAs and MDs (Table4). The situation described in item 24 (Not talking aboutdeath with a dying child) scored as number 14 in the entire

Table 1 The classification of low, moderate and high scores ofintensity and frequency

Low (25% percentile) Moderate High (75% percentile)

Intensity < 3.29 3.29–3.50 > 3.50

Frequency < 0.62 0.62–1.29 > 1.29


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group and for RNs, and as number 11 for both MDs andNAs (Table 4). On the situation described in item 25 (Per-form painful procedures), the MDS-R score of RNs andNAs were higher than for MDs. This item [20] scored

higher, on the 26-item ranking list, for RNs and NAs thanfor MDs. The situation described in item 26 (Decide whenuncertain) scored as number 17 on the 26-item rankinglist, in the entire group. This item [21] scored as number

Table 2 Moral distress intensity and frequency, in the entire group and by profession, 5 items together

All RNs MDs NAs RNs vs. MDs RNs vs. NAs MDs vs. NAs

Category n = 278 n = 157 n = 55 n = 66 p-value

Intensity:

Mean (SD) 3.10 (0.60) 3.09 (0.57) 2.95 (0.55) 3.25 (0.66) 0.093 0.029 0.002

Median (Range) 3.20 (0.60–4.00) 3.20 (0.80–4.00) 3.00 (1.80–4.00) 3.40 (0.60–4.00)

Frequency:

Mean (SD) 1.46 (0.63) 1.60 (0.61) 1.40 (0.47) 1.19 (0.68) 0.022 <0.001 0.044

Median (Range) 1.40 (0.00–3.60) 1.60 (0.00–3.60) 1.40 (0.60–2.60) 1.00 (0.00–3.00)

Table 3 Intensity, frequency, and MDS-R scores, by all and by profession, on the 5 items

All RNs MDs NAs

22. To not have time to have conversations with patients and families in a way that you think these should be carried out.

Intensity, Mean (SD) 3.45 (0.699) 3.41 (0.699) 3.45 (0.715) 3.52 (0.687)

Intensity, Median (Range) 4.00 (1–4) 4.00 (1–4) 4.00 (1–4) 4.00 (1–4)

Frequency, Mean (SD) 1.86 (1.015) 2.08 (0.984) 1.75 (0.907) 1.42 (1.036)

Frequency, Median (Range) 2.00 (0–4) 2.00 (0–4) 2.00 (0–4) 1.00 (0–4)

MDS-R score 6.45 7.17 6.04 5.11

23. To provide care despite that parents have unrealistic expectations of healthcare.





MDS-R score 5.01 5.17 4.67 4.89

24. To not talk about death with a dying child, despite that you think it is necessary.





MDS-R score 3.56 3.84 3.11 3.33

25. To perform painful/unpleasant procedures on school-age children who resist such treatment.





MDS-R score 4.29 4.86 2.94 4.13

26. To decide on care/treatment when you are uncertain about what is right.





MDS-R score 2.72 2.90 3.15 1.92


Fig. 1 Mean MDS-R scores per professional group in the Swedish paediatric MDS-R, 26 items


18 by RNs, similar to that of NAs. The MDS-R score ofMDs was higher than those of both RNs and NAs, scoringas number 10 of the ranking list for MDs (Table 4).

ReliabilityBoth the original 21-item and the 26-item versionsshowed good internal consistency for the overall sampleand for all professional groups. Cronbach’s alpha wasslightly higher for the 26-item than for the original 21-item version (Table 5).The inter-item correlation test suggested that two of

the five added items were redundant with two of the 21-items. The inter-item correlation between item 22 (Lackof time for conversations with patients/families) anditem 21 (To work in an unsafe staffing situation) was0.55. The inter-item correlation between item 24 (Nottalking about death with a dying child) and item 5 (Tofollow the family’s request not to talk about death …dying child) was 0.55.

DiscussionThis national cross-sectional survey at all paediatric on-cology centres in Sweden focuses on five situations(items) added to the Swedish paediatric MDS-R. The fiveitems were added in a previous study because partici-pants in cognitive interviews considered them to be im-portant [14]. The appropriateness of adding items tovalidated instruments could be questioned as it, for ex-ample, makes it difficult to compare the total MDS-Rscores with other studies, and for that reason the itemswere initially not included in the previously publishedresults from this national study and in the analysis of the

Swedish total MDS-R scores [11]. However, to maintainthe content validity also validated instruments need tobe adapted both to the specific context and to changesover time [22]. Furthermore, adding items of relevanceto the specific context of paediatric oncology improvedthe relevance of the instrument and possibly also the re-sponse rate. In accordance with other studies on moraldistress in paediatric settings, the overall moral distressintensity was comparatively higher than the frequency[9, 23]. Also in the results from the 21 items of thepaediatric MDS-R in this Swedish study, the situationswere experienced as disturbing (3.3), but not that com-mon (1.0) [11]. In accordance with the results of thecognitive interviews, the five added situations were morecommon, because the frequency of the five items to-gether was higher (1.46) than of the 21 items. Thus, wewould argue that the five items should be permanentlyincluded when measuring moral distress in the paediat-ric oncology context.As described in previous research, “Lack of time for

conversations with patients/families” was, by each of theprofessional groups, considered to be one of the mostmorally distressing situations. However, the results ofthe inter-item correlation test indicate that this addeditem could be viewed as redundant to the item “To workin an unsafe staffing situation”. This is in accordance toAtabay et al. [24], who presents lack of time and re-sources as one dimension of moral distress. The time as-pect was also highlighted when nurses working part-time experienced more moral distress than nurses work-ing full time [25]. A constant pressure of time, a lack ofstaff, and too many patients, leads to constant ethicalchallenges and a feeling of not being able to influencethe situation [24]. It is puzzling that these results arefrom upper middle- and high-income countries with re-sources in equipment and staff that HCPs in low-incomecountries could only dream of. One possible reason isthat standard of care varies depending on resources andthat it is morally distressing not being able to providecare at the same level that you have been used to [19].

Table 4 MDS-R scores and ranking of 5 items among 26 items, by all and by profession

All RNs MDs NAs

Items MDS-Rscore

Rankof 26

MDS-Rscore

Rankof 26

MDS-Rscore

Rankof 26

MDS-Rscore

Rankof 26

22 To not have time to conduct conversations with patients and families in away that you think these should be carried out.

6.45 2 7.17 2 6.04 2 5.11 2

23 To provide care despite that parents have unrealistic expectations ofhealthcare.

5.01 5 5.17 6 4.67 4 4.89 3

24 To not talk about death with a dying child, despite that you think it isnecessary.

3.56 14 3.84 14 3.11 11 3.33 11

25 To perform painful/unpleasant procedures on school-age children who re-sist such treatment.

4.29 8 4.86 8 2.94 14 4.13 7

26 To decide on care/treatment when you are uncertain about what is right. 2.72 17 2.90 18 3.15 10 1.92 17

Table 5 Reliability testing of the Swedish paediatric MDS-R withand without the added items

All RNs MDs NAs

Version Cronbach’s alpha

21 items 0.882 0.878 0.807 0.909

26 items 0.905 0.903 0.822 0.928


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However, even if there is a difference in the experienceof moral distress depending on context, lack of resourcesto relieve patients’ suffering has also been found to leadto moral distress in a low-income country [26].“Parents’ unrealistic expectations” were, in accordance

with other studies, scored highly by all HCPs. Eventhough the moral distress intensity was low, the situationoccurred often and thus there is a risk of the crescendoeffect when HCPs repeatedly experience morally distres-sing situations, with increased moral distress over time,due to a build-up of moral residue [20]. However, thelow intensity could also be explained by a learning effectdue to the high frequency [21]. Differences in parentand HCPs’ views concerning prognosis and goals havebeen suggested as being common in paediatric cancercare [27]. Furthermore, in previous studies HCPs havereported that unrealistic parental expectations hinderthe communication with children having life-threateningconditions [28, 29]. Parents’ prognostic understandingand attitudes have been identified as being the mostcommon barriers to discussing advanced care planningwith the children [28]. In a study of paediatric palliativecare, HCPs perceived parent’s unrealistic expectations ascomplicating the shared decision-making with patientsand parents [30]. Furthermore, the unrealistic expecta-tions of parents could be related to them being misin-formed and one of three suggested dimensions of moraldistress include misinformed patients, which here can beattributed to parents [24].One of the five added items was item 24 “To not talk

about death with a dying child” [14]. The decision to in-clude that item can be questioned, as it could be arguedthat this situation was already included in the originalversion of MDS-R, also supported by the results of theinter-item correlation test. The difference is that the ori-ginal item includes a request from the family, i.e. twoquestions for the respondents to consider: not talkingand following family’s request [14]. Our results indicatethat not talking about death with a dying child is slightlymore morally distressing when requested by the family(Fig. 1), especially for RNs and NAs. However, two ques-tions in one, also called a double-barrelled question, hasbeen described as a bias in question design [31]. Further-more, in the translation process of the original MDS-R,cognitive interviews revealed that not talking aboutdeath, for whatever reason, is a very distressing situation[14]. Furthermore, other researchers have described theemotional challenge for HCPs when parents decide tolimit the information to the child as well as when thechild refuses to talk about death to spare the parents[32]. Also, the nurses in a study by Hendricks-Fergusonet al. [33] described the inability to respond to unex-pected emotional comments from the dying children asvery distressing, causing guilt and regret. Another reason

for not being able to reach out to the child is languagebarriers [34, 35]. The results of a review of 65 studies inpaediatric end-of-life care showed that both parents andHCPs have a tendency to avoid discussions about deathwith children [36]. In one study, children expressed ahypothetical desire of being informed if the treatmentwere not to be successful [37].On the item about “Performing painful procedures on

children who resist”, RNs scored higher frequency thanNAs and MDs. This is not surprising because, in Swedenpainful procedures, on children that are not sedated, areprimarily performed by RNs. In the literature, proce-dures performed against patient’s wishes are most oftendiscussed together with unnecessary treatment [38, 39].In the original MDS-R, there are items about unneces-sary treatment, but there was no item capturing disre-gard for patient wishes [14] which has been identified asa clinical situation causing moral distress [13]. Further-more, performing painful procedures has emerged as animportant ethical issue in paediatric cancer care [39].“To decide when uncertain” is a situation consistent

with the second definition of moral distress, which in-cludes a moral dilemma, and it has been assumed tomatch physicians’ experiences more closely [6]. In accord-ance with this assumption, this situation caused the MDsmore moral distress, related to higher frequency of thissituation, than the other professions in this study. Eventhough it was scored by the whole group as number 17among the 26 items, the overall moderate frequency indi-cate that the item does not fully capture these situations.One reason for this could be that the item is too generallydesigned, and maybe it would have been better to describemore concrete situations with moral uncertainty indecision-making. In a previous study, paediatric oncolo-gists describe that they on a daily basis face difficult deci-sions that they prefer not to take by themselves [40]. Theincreased survival rate and the never-ending availability ofnon-standard treatment options in paediatric oncologyhas made the decisions even more difficult [3]. Further-more, the practice of shared decision-making with the pa-tients or proxy has been suggested to further increase themoral distress among physicians [41].In contrast to the development of MMD-HP, that used

data from several diverse settings, the decision to addthe five items was entirely based on data from paediatriconcology, to better capture moral distress in that setting[14, 15]. When comparing the five added items in theSwedish paediatric MDS-R to the MMD-HP by Epsteinet al. [15] there are some similarities in four of them.Item 22 (Lack of time for conversations with patients/families) is partly covered in the MMD-HP with an itemconcerning compromised patient care due to excessivedocumentation requirements. Both items focus indirectlyon missed care due to lack of time, however, the MMD-


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HP gives one specific reason for the lack of time. Item23 (Parents unrealistic expectations) is similar to an itemabout patients who have unclear or inconsistent treat-ment plans or who lack goals of care. In paediatric care,however, this item would be more applicable to parents.Furthermore, in MMD-HP the item “to follow thefamily’s request not to talk about death with a dyingchild” has been removed and the situation has possiblybeen included in the item “Follow a physician’s or familymember’s request not to discuss the patient’s prognosiswith the patient/family.” In item 24 (Not to talk aboutdeath with a dying child) in the present study, the reasonfor not talking was excluded in accordance to the aim toavoid double-barrelled questions. However, adding sev-eral reasons might have the same effect as the item is nolonger about the individual reasons [42]. Item 25 (Pain-ful procedures on children who resist) in the presentstudy captures a situation that is part of everyday care inpaediatrics where HCPs are not always able to practicecare as they think it should be practiced. Maybe the firstpart of the item in MMD-HP “Participate in care thatcauses unnecessary suffering …” is similar, but it is ques-tionable if it captures the feeling of being the cause ofthe suffering.Strengths of this study are that it is national and multi-

professional as it includes HCPs at all paediatric oncologycentres. Furthermore, despite the extreme work load andthe emphasis on the voluntary participation, the responserate was high which could possibly be explained by therelevance of the questionnaire but also that data collectionwas mainly performed during meetings when HCPs hadtime set aside to complete the questionnaire. A possiblelimitation of this study is that the statistical analyses donot take into account possible dependencies between par-ticipants of the same centre. A non-parametric statisticaltest was preferred rather than applying a parametric re-gression model to adjust for possible centre effects. Moststudies, see for example Hamric et al. [8] and Whiteheadet al. [1], only report the MDS-R scores, while in thepresent study both the MDS-R scores as well as the moraldistress intensities and frequencies are reported. The cal-culation of the MDS-R score could be questioned, as theexperience of the intensity of the moral burden is alwaysinseparably influenced by its frequency, but it enablescomparison with other studies. In interpreting the resultsit is important to consider both the possible crescendo ef-fect and the learning effect [20, 21]. Furthermore, in thisstudy Cronbach’s Alpha has been used to test reliability.In future research, the psychometric properties could befurther evaluated.

ConclusionsRNs experience the highest moral distress in four of thefive added items compared to the other professions.

MDs experience higher moral distress in the situationabout deciding when uncertain, because they experiencethe situation more often. Furthermore, it is clear thatRNs experience the situations more often than NAs do,while NAs find them more disturbing. The results indi-cate that the added situations occur often and are im-portant in capturing moral distress in paediatriconcology. Thus, four of the added items should be in-cluded in the original MDS-R, and the fifth reformulateditem about not talking about death with a dying childshould replace the original item when measuring moraldistress in the context of paediatric oncology and similarhospital settings. Further refinement of the MMD-HPcould include to develop a paediatric version that cap-tures the situations presented in the present study.

AbbreviationsHCP: Healthcare professional;; MD: Medical doctor; MDS: Moral distress scale;MDS-R: Moral distress scale-revised; NA: Nursing assistant; RN: Registerednurse; RR: Response rate; SPSS: Statistical Package for Social Sciences

AcknowledgementsA special thanks to the managers at the paediatric oncology centres, thelocal coordinators (Carina Fondin, Maria Lidén, Maria Olsson, Marie Sandgren,Jennie Stigmar and Eva Turup), the statistician (Ida Hed Myrberg), and mostof all to the participating registered nurses, medical doctors and nursingassistants.

Authors’ contributionsAll authors designed the study, carried out the data collection and dataanalysis. PP was the PI. MafS and CB drafted the manuscript and MafS andPP made major revisions. All authors read and approved the final manuscript.

FundingThe Swedish Childhood Cancer Fund financed this study (grant numbersPR2014–0116, TJ2016–0036, TJ2017–0011), and they did not have any role inthe design of the study, data collection, analysis, and in writing themanuscript.

Availability of data and materialsDue to respect for the participant’s anonymity the data collected andanalysed in the current study are not publicly available but may be availablefrom the corresponding author on reasonable request.

Ethics approval and consent to participateThe Regional Ethical Review Board in Stockholm decided that the legislationconcerning ethical review was not applicable, and had no objections to thestudy design, including the way consent was obtained (D-no: 2015/1782–31/5). A returned survey was considered to constitute the participant’sdemonstrated consent.

Consent for publicationNot applicable.

Competing interestsThe authors declare that they have no competing interests.

Author details1Department of Women’s and Children’s Health, Childhood Cancer ResearchUnit, Karolinska Institutet, Tomtebodavägen 18A, SE-171 77 Stockholm,Sweden. 2Paediatric Haematology and Oncology, Children’s and Women’sHealth Care, Karolinska University Hospital, Stockholm, Sweden. 3PaediatricNeurology and Muscular Skeletal Disorders and Homecare, Children’s andWomen’s Health Care, Karolinska University Hospital, Stockholm, Sweden.


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Received: 27 August 2019 Accepted: 6 January 2020

References1. Whitehead PB, Herbertson RK, Hamric AB, Epstein EG, Fisher JM. Moral

distress among healthcare professionals: report of an institution-widesurvey. J Nurs Scholarsh. 2015;47(2):117–25.

2. Dyo M, Kalowes P, Devries J. Moral distress and intention to leave: acomparison of adult and paediatric nurses by hospital setting. Intensive CritCare Nurs. 2016;36:42–8.

3. Dzeng E, Curtis JR. Understanding ethical climate, moral distress, andburnout: a novel tool and a conceptual framework. BMJ Qual Saf. 2018;27(10):766–70.

4. Wilson MA. Analysis and evaluation of the moral distress theory. NursForum. 2018;53(2):259–66.

5. Jameton A. Nursing practice : the ethical issues. Englewood Cliffs: Prentice-Hall; 1984.

6. Prentice T, Janvier A, Gillam L, Davis PG. Moral distress within neonatal andpaediatric intensive care units: a systematic review. Arch Dis Child. 2016;101(8):701–8.

7. O'Donnell P, Farrar A, BrintzenhofeSzoc K, Conrad AP, Danis M, Grady C,et al. Predictors of ethical stress, moral action and job satisfaction in healthcare social workers. Soc Work Health Care. 2008;46(3):29–51.

8. Hamric AB, Blackhall LJ. Nurse-physician perspectives on the care of dyingpatients in intensive care units: collaboration, moral distress, and ethicalclimate. Crit Care Med. 2007;35(2):422–9.

9. Trotochaud K, Coleman JR, Krawiecki N, McCracken C. Moral distress inpediatric healthcare providers. J Pediatr Nurs. 2015;30(6):908–14.

10. Lamiani G, Borghi L, Argentero P. When healthcare professionals cannot dothe right thing: a systematic review of moral distress and its correlates. JHealth Psychol. 2017;22(1):51–67.

11. Pergert P, Bartholdson C, Blomgren K, af Sandeberg M. Moral distress inpaediatric oncology–contributing factors and group differences. Nurs Ethics.2019;26(7–8):2351–63.

12. Corley MC, Elswick RK, Gorman M, Clor T. Development and evaluation of amoral distress scale. J Adv Nurs. 2001;33(2):250–6.

13. Hamric AB, Borchers CT, Epstein EG. Development and testing of aninstrument to measure moral distress in healthcare professionals. AJOB PrimRes. 2012;3(2):1–9.

14. af Sandeberg M, Wenemark M, Bartholdson C, Lutzen K, Pergert P. Tochange or not to change – translating and culturally adapting thepaediatric version of the Moral Distress Scale-Revised (MDS-R). BMC MedEthics. 2017;18(1):14.

15. Epstein EG, Whitehead PB, Prompahakul C, Thacker LR, Hamric AB.Enhancing understanding of moral distress: the measure of moral distressfor health care professionals. AJOB Empir Bioeth. 2019;10(2):113–24.

16. Collins D. Cognitive interviewing practice: Sage; 2014.17. Saris-Baglama R, Dewey C, Chisholm G, Kosinski M, Bjorner J, Ware J Jr. SF

health outcomes™ scoring software userLs guide. Lincoln: Quality Metric.Inc; 2004.

18. Clark LA, Watson D. Constructing validity: basic issues in objective scaledevelopment. Psychol Assess. 1995;7(3):309.

19. Huffman DM, Rittenmeyer L. How professional nurses working in hospitalenvironments experience moral distress: a systematic review. Crit Care NursClin North Am. 2012;24(1):91–100.

20. Epstein EG, Hamric AB. Moral distress, moral residue, and the crescendoeffect. J Clin Ethics. 2009;20(4):330–42.

21. Rushton CH, Caldwell M, Kurtz M. CE: Moral distress: a catalyst in buildingmoral resilience. Am J Nurs. 2016;116(7):40–9.

22. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the processof cross-cultural adaptation of self-report measures. Spine (Phila Pa 1976).2000;25(24):3186–91.

23. Lazzarin M, Biondi A, Di Mauro S. Moral distress in nurses in oncology andhaematology units. Nurs Ethics. 2012;19(2):183–95.

24. Atabay G, Cangarli BG, Penbek S. Impact of ethical climate on moral distressrevisited: multidimensional view. Nurs Ethics. 2015;22(1):103–16.

25. de Veer AJ, Francke AL, Struijs A, Willems DL. Determinants of moral distressin daily nursing practice: a cross sectional correlational questionnaire survey.Int J Nurs Stud. 2013;50(1):100–8.

26. Harrowing JN, Mill J. Moral distress among Ugandan nurses providing HIVcare: a critical ethnography. Int J Nurs Stud. 2010;47(6):723–31.

27. Rosenberg AR, Orellana L, Kang TI, Geyer JR, Feudtner C, Dussel V, et al.Differences in parent-provider concordance regarding prognosis and goalsof care among children with advanced cancer. J Clin Oncol. 2014;32(27):3005–11.

28. Durall A, Zurakowski D, Wolfe J. Barriers to conducting advance carediscussions for children with life-threatening conditions. Pediatrics. 2012;129(4):e975–82.

29. Yoshida S, Shimizu K, Kobayashi M, Inoguchi H, Oshima Y, Dotani C, et al.Barriers of healthcare providers against end-of-life discussions with pediatriccancer patients. Jpn J Clin Oncol. 2014;44(8):729–35.

30. Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ. Hospital staff andfamily perspectives regarding quality of pediatric palliative care. Pediatrics.2004;114(5):1248–52.

31. Choi BC, Pak AW. Peer reviewed: a catalog of biases in questionnaires. PrevChronic Dis. 2005;2(1):A13.

32. Montgomery KE, Sawin KJ, Hendricks-Ferguson V. Communication duringpalliative care and end of life: perceptions of experienced pediatriconcology nurses. Cancer Nurs. 2017;40(2):E47–57.

33. Hendricks-Ferguson VL, Sawin KJ, Montgomery K, Dupree C, Phillips-SalimiCR, Carr B, et al. Novice nurses’ experiences with palliative and end-of-lifecommunication. J Pediatr Oncol Nurs. 2015;32(4):240–52.

34. Beckstrand RL, Rawle NL, Callister L, Mandleco BL. Pediatric nurses'perceptions of obstacles and supportive behaviors in end-of-life care. Am JCrit Care. 2010;19(6):543–52.

35. Granhagen Jungner J, Tiselius E, Blomgren K, Lützén K, Pergert P. Languagebarriers and the use of interpreters: a national multisite cross-sectionalsurvey in paediatric oncology care. Acta Oncol. 2019;58(7):1015–20.

36. Marsac ML, Kindler C, Weiss D, Ragsdale L. Let's talk about it: supportingfamily communication during end-of-life care of pediatric patients. J PalliatMed. 2018;21(6):862–78.

37. Jalmsell L, Lovgren M, Kreicbergs U, Henter JI, Frost BM. Children withcancer share their views: tell the truth but leave room for hope. ActaPaediatr. 2016;105(9):1094–9.

38. Haahr A, Norlyk A, Martinsen B, Dreyer P. Nurses experiences of ethicaldilemmas: a review. Nurs Ethics. 2019. [Epub ahead of print].

39. Bartholdson C, Lutzen K, Blomgren K, Pergert P. Experiences of ethical issueswhen caring for children with cancer. Cancer Nurs. 2015;38(2):125–32.

40. Stenmarker M, Hallberg U, Palmerus K, Marky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr BloodCancer. 2010;55(3):478–84.

41. Prentice TM, Gillam L, Davis PG, Janvier A. Always a burden? Healthcareproviders' perspectives on moral distress. Arch Dis Child Fetal Neonatal Ed.2018;103(5):F441–F5.

42. Pergert P, Bartholdson C, Wenemark M, Lützén K, af Sandeberg M.Translating and culturally adapting the shortened version of the HospitalEthical Climate Survey (HECS-S) – Retaining or modifying validatedinstruments. BMC Med Ethics. 2018;19(1):35.



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QUESTIONNAIRE PE6(21)

Important situations that capture moral distress in paediatric oncology INSTRUCTIONS

• Read through the article and answer the multiple-choice questions provided below.

• Some questions may have more than one correct answer; in which case you must mark all the correct answers.

Question 1: Which of the following are TRUE regarding moral distress in healthcare?

A: It is related to burnout, low job-satisfaction, and high turnover of healthcare professionals

B: It impacts quality of patient care C: It is a consequence of knowing what is ethically

right, but being unable to act accordingly D: It can result in a moral dilemma (a conflict of values

when one must take a decision when not knowing what is ethically right)

Question 2: Which of the following items were added to the original MDS-R?

A: Lack of time for conversations with patients/families

B: Parents’ unrealistic expectations C: Not to talk about death with a dying child D: To perform painful procedures

Question 3: What did this study intend to research?

A: How the two items ranked among the 26 items, and if there were differences between professions

B: How much the situations described disturbed the HCPs (health care professionals) and if there were differences between professions

C: What the levels of moral distress were in the situations described, and if there were differences between professions

D: How frequent the situations described were, and if there were differences between professions

Question 4: Which of the following are CORRECT regarding the results of this study?

A: On the five items together, registered nurses (RNs) reported significantly higher frequency than the other two professions (nursing assistants and medical doctors)

B: On the five items together, medical doctors (MDs) reported significantly higher moral distress intensity and lower frequency than RNs and nursing assistants (NAs)

C: With the “lack of time for conversations with patients/families” situation, the overall moral distress intensity was low, and the frequency scores were moderate

D: Both the moral distress intensity and frequency were moderate with the “not talk about death with a dying child” situation

Question 5: Regarding MDS-R scores and ranking, is it TRUE that the NAs rated one item, namely not discussing the prognosis with parents, as slightly higher than the others?

A: YES B: NO

Question 6: Complete the statement: “As described in previous research, ……………………………. was considered to be one of the most morally distressing situations by each of the professional groups.”

A: Parents’ unrealistic expectations B: Not to talk about death with a dying child C: Lack of time for conversations with

patients/families D: To perform painful procedures E: To decide on treatment/care when uncertain

Question 7: The following statement refers to which item in the questionnaire:

“Parents’ prognostic understanding and attitudes have been identified as being the most common barriers to discussing advanced care planning with the children.”

A: To not talk about death with a dying child B: Performing painful procedures on children who

resist C: Lack of time for conversations with

patients/families D: None of the above

Question 8: Which of the following are CORRECT regarding item 26 in the questionnaire?

A: It is consistent with the second definition of moral distress, which includes a moral dilemma

B: It has been assumed to closely match physicians’ experiences

C: Its overall moderate frequency indicates that the question does not fully capture the types of situations it refers to

D: None of the above

Question 9: Which of the following are strengths of this study?

A: In the present study both the MDS-R scores as well as the moral distress intensities and frequencies were reported

B: It was national and multiprofessional C: Statistical analyses considered possible

dependencies between participants of the same centre

D: The relevance of the questionnaire is indicated by the high response rate

E: Data collection was mainly performed during meetings

Question 10: Is it TRUE or FALSE that the RNs experienced the highest moral distress in four of the five added items compared to the other professions?

A: TRUE B: FALSE

END

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