Moral distress in nurses in oncology and haematology ...

Article

Moral distress in nurses in oncology and haematology units

Nursing Ethics 19(2) 183–195 ª The Author(s) 2012 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733011416840 nej.sagepub.com

Michela Lazzarin San Gerardo Hospital, Italy

Andrea Biondi University of Milano-Bicocca, Italy

Stefania Di Mauro University of Milano-Bicocca, Italy

Abstract One of the difficulties nurses experience in clinical practice in relation to ethical issues in connection with young oncology patients is moral distress. In this descriptive correlational study, the Moral Distress ScalePaediatric Version (MDS-PV) was translated from the original language and tested on a conventional sample of nurses working in paediatric oncology and haematology wards, in six north paediatric hospitals of Italy. 13.7% of the total respondents claimed that they had changed unit or hospital due to moral distress. The items with the highest mean intensity in the sample were almost all connected with medical and nursing competence and have considerably higher values than frequency. The instrument was found to be reliable. The results confirmed the validity of the MDS-PV (Cronbach’s alpha ¼ 0.959). This study represents the first small-scale attempt to validate MDS-PV for use in paediatric oncology-ematology nurses in Italy. Keywords ethics, instrument translation, moral distress, paediatric haematology and oncology, painful feeling, staff nurse stress, turnover

Introduction Paediatric oncology and haematology units are characterized by a care and ethical complexity that readily becomes a setting for moral distress, as described by A Jameton,1 particularly when nurses have to treat terminally ill children. Davies et al.2 interviewed 25 nurses in a grounded theory study. Where nurses were the first members of the professional team to accept the inevitability of a child’s death, they struggled with the dilemma between their obligation to follow physicians’ orders and their duty to provide a comfortable death. Nurses’ moral distress was compounded by following orders that were in conflict with their belief that children should be allowed to die peacefully without unnecessary pain. Because nurses had developed close relationships with the children and/or families, they were profoundly aware of patients’ and families preferences for care.

Corresponding author: Michela Lazzarin, San Gerardo Hospital, Via Pergolesi, 33 – 20900, Monza – Monza Brianza, Italy Email: [email protected]

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Nurses felt that they had violated this relationship when they were forced to continue to inflict suffering beyond the point of a possible cure.2

Background Moral distress is one of the greatest problems facing the nursing profession and involves nurses in all areas of healthcare. It is greatest in settings that are understaffed or where staff are inadequately trained and organizational policies and procedures put nurses in situations of difficulty or even make it impossible for them to meet and satisfy the needs of patients and their families.3 In their daily practice, nurses encounter situations in which ethically appropriate decisions are made difficult or impossible by environmental factors. Certain experiences can generate what Jameton1 defined as moral distress: a painful feeling and/or psychological disequilibrium that occurs when nurses know the ethically appropriate action required by the situation but are unable to carry out the same action, on account of institutionalized obstacles. Many studies on job satisfaction and personnel turnover have focused on stress among nurses, without looking at the role played by moral distress.4 Moral problems experienced by nurses when caring for terminally ill patients, are related to: communicating honestly with patients about their situation and death because they are afraid of destroying hope; managing symptoms such as pain, because of the fear that treatment could hasten death; and having to collaborate in medical treatment that they perceive as inappropriate because the burden and benefit to patients is unbalanced.5 The sense of uncertainty, of being inadequately informed about why a certain treatment has to be administered, disagreeing with the opinions of colleagues and worrying about protecting oneself as much as the patient would appear to have an important influence on nurses’ perception of moral issues.5 The causes of moral distress described by Corley et al.3,6 and Wilkinson7 are: the depersonalization of care (an attitude very often related to institutional requirements); harm to patients in the form of pain or suffering; the non-participation of nurses in ‘end of care’ decision making; poor pain management; disregard for patients’ choices about accepting or refusing treatment; and the inadequate information given to patients and their families concerning the various treatment options. Raines8 showed that the most frequent sources of moral distress among oncology nurses are pain management and hospital budget issues. Wilkinson7 also identified three main ethical fields that generate moral distress among nurses, namely: the prolonging of life; the performance of unnecessary tests and procedures; and the desire to tell patients and their families the truth. In qualitative research applying the concept of moral distress, Wilkinson7 noted that it was associated with nurses’ resignation and with them even leaving the profession. Moral distress has been found to be manifested as anger, frustration, guilt, loss of self-worth, depression, nightmares, suffering, resentment, frustration, sorrow, anxiety, helplessness and powerlessness. Nurses suffer from the feeling that their moral integrity is compromised when torn between opposing moral responsibilities.9,10 They may choose to leave their positions or the profession in response to moral distress.3,4,9 Corley et al.,6 examined the relationship between moral distress intensity and frequency and the ethical work environments. In a group of 106 nurses from two large medical centres they found that moral distress intensity and ethical work environments were correlated with moral distress frequency. The ethical work environment predicted moral distress intensity. In a descriptive study of 28 nurses working in a medical intensive care unit, Elpern et al.9 reported a moderate level of moral distress overall. Highest levels of distress were associated with the provision of aggressive care to patients not expected to benefit from that care. Moral distress was significantly correlated with years of nursing experience. Nurses reported that moral distress adversely affected job satisfaction, retention, psychological and physical well-being, self-image and spirituality.

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Moral distress has a negative impact on working environments in the health sector.11 Developing a more specific understanding of the moral response to issues that arise in nursing practice could help us identify more efficacious strategies for managing these complex situations.6 The nurses that provide care in oncology and transplant units are more exposed to the situations that cause moral distress than those who work with other types of patient care.12 Some areas, such as oncology, have not been thoroughly explored in studies on ethical issues in nursing, despite the fact that the ethical dilemmas concerning palliative care continue to grow. There are no published studies in either Italy or abroad that describe moral distress in the specific setting of paediatric oncology and haematology. The few studies on moral distress specific to the paediatric setting13,14 are mainly conducted on nurses working in neonatology or paediatric surgery units. A greater number of studies have explored the moral distress of nurses working in other areas: medicine and surgery,6,15 intensive care,4,9,16 and other areas.8 Numerous studies have used a qualitative approach to moral distress. Gutierrez17 described how critical care nurses’ experienced moral distress with a qualitative, descriptive methodology of 12 critical care nurses (open ended guided interview). The biopsychosocial effects of moral distress on the nurses were varied, with emotional and professional effects cited most frequently. Feelings of anger and sadness were identified by over half of the nurses and professional effects included emotional and physical withdrawal from others and reluctance to return to work and care for the patient. Ka¨lvemark Sporrong et al.18 used a focus group method to identify situations of ethical dilemma and moral distress among health care providers of different categories both in hospital clinics and pharmacies. The results show that all categories of staff express experiences of moral distress; prior research has predominantly focused on distress experienced by nurses: the fact that nurses have an obligation to carry out the physician’s prescriptions can sometimes cause problems. On occasion, doctors and nurses seem to disagree because of their different values, or often they are in disagreement about prescriptions. Descriptive studies9,12,13,19–24 on moral distress are numerous: all authors are guided by the definition of Jameton and there has been increasing interest in the phenomenon since 2000. There are no descriptive articles by Italian authors of moral distress.

Choosing an instrument for measuring moral distress Corley 4 developed the Moral Distress Scale (MDS) to measure two aspects of moral distress: frequency and intensity. We contacted Professor Corley by mail to obtain information on the instrument and, in addition to the MDS, she also provided us with the MDS-Paediatric Version (MDS-PV). This latter instrument was developed primarily to measure moral distress in Neonatal Intensive Care Units or Perinatal Intensive Care Units and its reliability has already been evaluated, but not published. The MDS-PV was initially made of a list of 38 items. Each item is associated to one 0–6 Likert scale for intensity and another Likert scale for frequency. Being the first in Italy, this study could contribute to introducing the concept of moral distress in our hospital units and to commencing its measurement by providing a translated instrument. Moral distress could vary greatly depending on the type of patient being cared for or the type of institute.

The study Aim, design and sample of the study The aim of this descriptive, correlational study was to translate the paediatric version of the MDS, the MDS-PV from the original language (English). Having validated the translation, the MDS-PV was tested

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on a conventional sample of 235 nurses working in six of the largest Italian oncology and haematology centres, to obtain results on the frequency and intensity of moral distress experienced by nurses.These albeit preliminary results could answer the following research questions:

What moral distress levels are encountered by nurses working in paediatric oncology and haematology units? How often do nurses working in paediatric oncology and haematology units experience moral distress? Is there a relationship between the number of years of nursing experience in the paediatric oncology and haematology field, academic qualification and/or need to change unit and moral distress? The expected primary endpoints included:

nurses working in paediatric oncology and haematology units have a high level of moral distress; the confirmation or rejection of a correlation between demographic variables, years of experience working in paediatric haematology, academic qualification and moral distress; the validated tool is reliable.

On the basis of studies conducted in literature using the MDS,4,6,9,15,16 we noticed that the samples studied are always convenience samples, whose size varies from a few dozen to several hundred, and consequently, we decided to use a convenience sample. The sample considered included nurses in six of north Italy’s largest oncology and haematology centres, with the following inclusion criteria:

working in paediatric haematology – oncology or bone marrow transplant units, paediatric haematology outpatient clinics/day hospitals and paediatric wards with dedicated beds for haematological and oncological patients; willingness to fill out the MDS-PV. The following exclusion criteria were also observed:

nurses who had started work in the unit less than one month previously; nurses who had already handed in maternity notice to the occupational medicine service in the MDS-PV administration period; nurses on leave.

Subjects were recruited according to the following procedure: we contacted the head physician in charge of the unit by telephone or email and if he/she expressed interest in the research, he/she was provided with a concise description of the study. Once formal authorization had been obtained, we contacted the head nurses, asking them if they were willing to participate and be contact persons for the distribution, diffusion and collection of the MDS-PV. With the MDS-PV were provided an ID code (number-province) for each respondent; a letter presenting the study and containing the name of the principal investigator and coordinating centre, contact details and explaining that data will be kept anonymous; and a case report form for participants’ general details (excluding sensitive data) and further data relating to the years of experience as a nurse, years working in paediatric oncology and haematology, academic qualification and any changes of unit due to moral distress. In the MDS-PV, respondents were asked to indicate a value on a 7-point Likert scale (from 0 ¼ none to 6 ¼ great extent) of the level of the moral distress (intensity) experienced in each of the situations listed and the frequency (from 0 ¼ never to 6 ¼ very frequently) with which these situations were encountered. Other further measures in order to provide stronger validity data for MDS-PV are not present in this study frame because the authors decided to concentrate on translating the scale into Italian for first time;

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identifying a second point in time to present the scale to a larger sample. Data was collected between October and December 2009.

Ethical considerations We used all the necessary measures to ensure the ethical conduct of the study. The study was presented to the Ethical Committee of the Coordinator Hospital, which decided that, according to Italian regulations, no permission was needed from the Committee. Anonymity and the voluntary nature of participation were assured in both phases of the study. The right to refuse or discontinue participation without giving a reason was stressed. No personal identification was used on the MDS-PV and the questionnaires.

Data analysis The cooperation of a statistician was considered essential. The data were analysed using SPSS v11 processing software. The validity of the MDS-PV was conducted considering the fac¸ade validity: this type of validity has nothing to do with calculations and scores25 and is performed to preserve the external appearance of the original instrument. In our case, nothing of the exteriority of the MDS-PV had changed. As far as the content validity, the MDS has already been validated4 with regard to its content by a group of experts including Jameton and Wilkinson.4 The MDS differs from the MDS-PV only regarding the references to pediatric rather than adult subjects used in MDS. We had to remove five items (reducing the scale from 38 to 33 items) because they dealt with euthanasia and the patient’s inability to pay for treatment due to a lack of insurance, which are not applicable to the Italian situation. The decision to eliminate these items was discussed with Professor Corley, who agreed with our choice to exclude them. The items removed were examined by the authors to ensure content validity. The reliability of MDS-PV was performed using Cronbach’s alpha. Data analysis was performed on the sample of nurses according to the following procedure: for each of the 33 items of the MDS-PV we obtained a single score, calculated by multiplying the moral distress intensity value by the moral distress frequency value for that item. We then obtained the total score, which we will call Moral Distress Score, for each subject by adding together the values obtained for each item. The Moral Distress Score could therefore vary from a minimum of 0 to a maximum of 1188.This counting method was used in the study by Elpern.9 The relationship between the moral distress score and discrete quantitative variables such as age, years of nursing experience and years of experience working as a nurse in paediatric oncology or haematology was calculated using Pearson’s linear correlation. The relationship between the moral distress score and ordinal variables (such as academic qualification) and nominal variables (marital status, presence of offspring, job change and setting change due to moral distress) was calculated using Kruskal-Wallis’ non-parametric test. Having studied the value obtained with the Moral Distress Score, we also analysed the highest mean intensities and frequencies of the items in the sample overall and per centre.

Validity and reliability of MDS-PV Translation quality and validation of the translated tool play an essential role in making sure that the results obtained in studies in which instruments are translated from the original to a target language are not due to translation errors, but rather real differences in or similarities between cultures concerning the phenomenon explored.26 Findings in literature show that there are many different translation methods; however, very few authors have dealt with this topic as the main focus of their research. Maneesriwongul and Dixon26 performed a

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stringent and thorough review of literature on the translation methods used on measurement instruments in the nursing field. The choice of methodology depends on: aims of the study, availability of translators and bilingual subjects, economic resources and time.26 Having examined these factors, we chose the back-translation and monolingual test method to translate the MDS-PV. The forward translation was reviewed by the researchers and a psychologist to make the Italian version of the MDS-PV more fluid and appropriate to the target language. This version was then sent to a bilingual translator who had never seen the original scale and who independently translated the Italian version. Lastly, the original version of the MDS-PV and the English translation were compared to confirm semantic and conceptual equivalence. This comparison also involved Professor Corley, who confirmed that the two versions were equivalent and that the conceptual integrity of the original version had been maintained. The result of the comparison of each item showed that the differences between the two versions merely depend on the fact that a literal translation of the original text would be impossible. The procedure followed when translating the MDS-PV was strict and in line with the indications present in literature. We can confirm that the Italian version of the MDS-PV had a semantic and conceptual equivalence with the original scale. The scale translated in this way and ready for administration was first tested on a small group of 15 students in the 2nd year of a Master’s Degree in Nursing Science, who had just finished a course on nursing research methods, to make sure that the wording of the various items and the way in which it should be completed were comprehensible. This pre-test confirmed that the presentation of the scale and the content of the items were comprehensible. In the scales obtained from the pre-test group, the intensity and frequency of the individual situations had been filled in clearly. For situations with a frequency of 0, the intensity of moral distress was also 0, as it goes without saying that, if a certain situation had not been experienced, it was not possible to indicate a moral distress intensity value.

Results Of the 235 nurses initially selected as potential study participants, as they satisfied the criteria of inclusion, 182, equal to 77.44%, filled in and returned the scale. The valid case report form for participants’ general details was 182. The moral distress scores considered valid (no missing values in intensity and frequency) were 156 (85.7% of 182 respondents). Of the total valid sample, 95% were female nurses and 98% were Italian nationals, making it extremely homogeneous as regards gender and nationality. One particularly interesting result concerns the percentage of subjects who said that they had changed unit or hospital for moral distress reasons, equal to 13.7% of the total valid sample. Table 1 shows some of the general details of interest for the sample analysed. One aspect worthy of attention was the response to the question ‘Since you have been working with children with blood diseases or cancer, have you ever considered changing sector?’ 50.5% of the sample said ‘yes’. Of these, 68.5% wanted to do so because ‘Working with children with blood diseases/cancer is humanely and psychologically very difficult’, whereas 15.2% attributed it to moral distress and therefore the presence of institutionalized obstacles (lack of time, supervisory disinterest, medical power, institution policy, legal limits) that do not make it possible to work in a more ethically correct way. This data on the need for change is also in favour of the data present in literature12,13 concerning the difficulties of working with these types of patient, a difficulty with psychological, as well as ethical and moral repercussions. 13% of the subjects indicated that the will to change also depends on the fact that working in these units requires too great a physical and mental effort. 50% of the sample (n ¼ 156) gave a Moral Distress Score lower than 193 (median) and therefore low in relation to the maximum value of 956 (Table 2). However, it should be pointed out that only 5% of participants obtained a score higher than 449. The mean value

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Table 1. General details of the sample analysis

Marital status: unmarried married separated living with a partner widow/er Age brackets: 20–29 30–39 40–49 50þ Academic qualification: Three-year Nursing Degree University Nursing Diploma Equipollent qualification pursuant to Law 42/1999 Children’s nurse diploma Other Other qualifications (AFD, DAI, Master’s, specialist degree): Yes No Children: Yes No Subjects already in possession of information on moral distress Source of information: Congresses/meetings/seminars Basic training Self-researched

n ¼ 182

%

66 87 8 19 2

36.3 47.8 4.4 10.4 1.1

43 71 58 10

23.6 39 31.9 5.5

54 17 49 61 1

29.7 9.3 26.9 33.5 0.5

21 161

11.5 88.5

86 96 93

47.3 52.7 51.1

44 24 17

47.3 25.8 18.3

calculated over 156 moral distress score sample was, indeed, very low and equal to about 229. Overall, the score obtained would appear to indicate a low frequency and intensity of the phenomenon being analysed. Among those who had changed unit or hospital for moral distress reasons (13.7% of the sample), the mean and median Moral Distress Score values (282 and 263, respectively) are higher than those who had not changed job (mean Moral Distress Score 221, median Moral Distress Score 183) (Table 3). This result confirms the scale’s validity as those who confirmed they had encountered situations of moral distress indicated higher scores. However, amongst those who had not changed job, 5% obtained a markedly higher Moral Distress Score than the group that had changed job, but in any case decided to continue working in the same unit. The relationship between Moral Distress Score and marital status, presence of offspring, number of offspring, academic qualification and change of job for moral distress calculated using the Kruskal-Wallis, is not significant (p-value > 0.05) and therefore there are no significant differences in score in relation to these variables. The correlation between the moral distress score, age, years of nursing experience and years of experience working as a nurse in paediatric oncology or haematology (calculated using Pearson’s linear correlation) were not significant (p-value > 0.05).

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Table 2. Statistic analysis summary of Moral Distress Score

N ¼ 156

Mean

Standard Deviation

Min

Max

25%

Median

75%

95%

229.41

164.5

0

956

118.25

193

281.50

449.30

Table 3. Statistic analysis summary of Moral Distress Score among those who had changed unit or hospital for moral distress reasons

Change Unit (YES n ¼ 21) Change Unit (NO n ¼ 135)

Mean

Standard Deviation

Min

Max

25%

Median

75%

95%

282.09 221.21

191.08 158.87

49 0

956 941

171 111

263 183

317 276

457 573

Table 4. Items that most frequently and least frequently generate moral distress for the overall sample (mean values) Items with highest mean frequency in increasing order

Mean frequency values

Items with lowest mean frequency in increasing order

Mean frequency values

Following orders for pain medication even when the medications prescribed do not control the pain Providing care that does not relieve the child’s suffering because physician fears increasing dose of pain medication will cause death Following the family’s request not to discuss death with a child who asks if they are dying Initiating extensive life-saving actions when I think it only prolongs death

1.99

Assisting a physician who performs a test or treatment without informed consent

0.80

2.07

0.82

Carrying out a physician’s order for unnecessary tests and treatment Following the family’s wishes to continue life support even though it is not in the best interest of the child

2.63

Assisting physicians who are practising procedures on a child after CPR has been unsuccessful Giving medicine intravenously during a Code with no compressions or intubation Following the physician’s request not to discuss Code status with the family when the child becomes ‘vent dependent’ Being required to care for a child I am not competent to care for Observing without taking action when health care personnel do not respect the child’s privacy

2.14 2.39

2.63

0.85 0.85

1.07 1.11

The only relationship that was significant (p-value < 0.05) was that calculated using the Kruskal-Wallis test among part- and full-time work and scores with alpha equal to 0.040. Full-time nurses obtained higher MDS scores than those working part time. It was decided to analyse the intensity and frequency of each item individually, calculating the mean frequency and mean intensity. Table 4 above lists in increasing order the first six items with the highest mean frequency and the first six items with the lowest mean frequency. The highest frequency is 2.63 and positioned on average value. The items identified as being the most frequent regarded two specific areas: pharmaceutical pain management and management of death with the patient and his/her family. The item with the lowest absolute frequency concerns informed consent (‘Assist a physician who performs a test or treatment without informed consent’), which suggests that the consent procedure is fully effective, at least in paediatric settings, due, in addition to ethical and legal reasons, above all to the presence of the parents, who expect constant information about their son or daughter’s care.

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Table 5. Items with highest and lowest moral distress intensity for the overall sample (mean values) Mean Mean Items with highest mean intensity in increasing intensity Items with lowest mean intensity in increasing intensity values values order order Carrying out a work assignment in which I do not feel professionally competent

4.42

Working with levels of nurse staffing that I consider ‘unsafe’

4.42

Assisting a physician who in your opinion is providing incompetent care Work with nurses who are not as competent as the patient care requires Providing care that does not relieve the child’s suffering because physician fears increasing dose of pain medication will cause death Working with physicians who are not as competent as the patient care requires

4.45 4.55 4.57

4.63

Following the family’s wishes for the child’s care when I do not agree with them but do so because hospital administration fears a lawsuit Preparing a child with severe anoxia and ‘likely vent dependent’ for surgery to have a gastrostomy tube put in Assisting a physician who performs a test or treatment without informed consent Asking the patient’s family about donating organs when the child’s death is inevitable Giving medication intravenously during a Code with no compressions or intubations Observing without taking action when healthcare personnel do not respect the child’s privacy

2.90

3.03

3.26 3.40 3.45

3.47

In general, the items identified with the lowest frequency concern intensive care and emergency practices, the lack of expertise and protection of the minor’s privacy. The same type of analysis was repeated for each centre in order to identify any differences. It is interesting to note that the most frequent items are common to all centres. For instance, the ‘Follow the family’s wishes to continue life support even though it is not in the best interest of the child’ item is present in all centres, with a mean frequency that varies from a minimum of 2.10 to a maximum of 3.45. In five out of six centres, the item ‘Initiate extensive life-saving actions when I think it only prolongs death’ is also present with a mean frequency of between 2.05 and 3.19. In four out of six centres, the following items are also present among the six most frequent: ‘Follow the family’s request not to discuss death with a child who asks if they are dying’ and ‘Carry out a physician’s order for unnecessary tests and treatment’. We can say for sure that the ‘end of life’ issue is that which most affects the frequency of situations causing moral distress. There are also certain similarities between centres for items with the lowest mean frequency. For example, the item ‘Prepare a child with severe anoxia and ‘likely vent dependent’ for surgery to have a gastrostomy tube put in’ is present in five centres with a mean frequency ranging from 0.24 to 0.52 and that is therefore very low. The ‘Assist physicians who are practising procedures on a child after CPR has been unsuccessful’ item is one of the least frequent in four out of six centres with values of between 0.47 and 1. In general, the least frequent items concern incorrect medical and/or nursing behaviour in relation to the patient and his/her family (lack of informed consent, not discussing the emergency condition with parents, not reporting situations of abuse on the minor by those responsible for him/her). In particular, the item on organ donation is one of the least frequent (present among the least frequent items in four out of six centres and with mean values of between 0.30 and 0.65. In one centre it was 0.88 and at seventh place among the least frequent), which can be justified by the fact that this procedure is not performed on patients who die from cancer and/or blood diseases. Table 5 shows items with the and lowest mean moral distress intensities in the overall sample.

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One problem encountered when attempting to interpret this intensity table is connected with the fact that in some cases, the intensity of the situation is indicated as probable with a frequency of 0. This situation may overestimate especially data relating to the calculation of highest mean intensity. The times in which zero frequency but above-zero intensity are indicated in the highest item in Table 5 is limited at 3%. The times in which zero frequency but above-zero intensity are indicated in the lowest item in Table 5 is limited at 7%. The items not completed in relation to intensity and frequency or filled in with only intensity or with only frequency (the latter greater than or equal to 1) were considered missing. For items with a single frequency of 0, it was assumed that the missing intensity was equal to 0, taking into account that the calculation of the Moral Distress Score (product of intensity and frequency) would not change analysis. This view assumes that, in the instructions for completing the scale, it is specified that the situations reported ‘are found in clinical practice’ and therefore it was necessary to express an intensity greater than 0 in a frequency greater than 0 (the situation must occur to determine the intensity of moral stress). Many respondents indicated that they were set equal to 0 intensity and frequency in cases where the situation had never occurred (‘if the situation does not occur, I can not know that I could feel the moral intensity of stress’). Wanting to calculate the real position of moral intensity of stress, giving the zero frequency unreported for items with high intensity (‘situation that could create me stress morality, but that does not occur in practice’) did not result in an abnormal increase in intensity in the calculation of the Moral Distress Score. For this reason, the method of calculating the moral distress score helps us to take account of this bias. As there was no time for a second administration, and following consultation with Professor Corley, the reliability of the instrument used in the research presented here was calculated using Cronbach’s alpha. Reliability with Cronbach’s alpha was calculated both on the product of the frequency multiplied by the intensity of each individual item (alpha ¼ 0.959), and on intensity and frequency individually for each individual item (alpha ¼ 0.967 and 0.95, respectively). These results suggest that the instrument is reliable.

Discussion This study has two main limits, both of which are related to sample selection and, more specifically, the choice of a convenience sample and the size of the sample. This study, conducted on a very limited sample, aims to provide an initial indication of the validity of the Italian version of the instrument. This data can be added to that obtained from other future Italian validation studies, in order to evaluate with greater significance the statistical performances of the Italian version of the MDS-PV. One particularly interesting result concerns the percentage of subjects who said that they had changed unit or hospital for moral distress reasons, equal to 13.7% of respondent. This data is in line with the findings in the study conducted by Professor Corley4 in which, of the 158 nurses who completed the MDS, 15% (n ¼ 23) said they left their last job due to moral distress. The fact that 13.7% of the sample left their last job for moral distress reasons is food for thought, as it suggests that this is not a new phenomenon among professional nurses and that experiencing moral distress can lead to a decision as important as leaving the job. Another piece of information to be combined with job changes is that 50.5% of the sample is considering leaving paediatric oncology and/or haematology primarily for humane/psychological but also moral distress reasons. As indicated by Jameton,1 nurses and other professionals who encounter ethical dilemmas experience distress when they accompany a child in the terminal stages of their disease and they are prevented from acting in agreement with their personal and professional values. This strong clash of values can lead to a personal unease so great that it can lead to the decision to change job. As reported previously also by Corley27 and Corley et al.6 none of the demographical variables (age, education, gender) or job-related variables (working environment, years of nursing experience, years of experience in the current role) was seen to be a correlate of moral distress. In the 2005 study, age was

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negatively related with the intensity of moral distress and this data was partly justified by assuming that experience can teach the individual how to tackle the ethical problems that arise daily. In the work by Corley et al.,6 mean frequency varied from 0.08 to 3.05. In our study the same values range from a minimum of 0.80 to a maximum of 2.63. In their 2005 contribution, Corley et al.6 identified a mean moral distress intensity of between 2.61 and 4.79 and found that 8 items had a mean of 4 or higher. In our study the mean intensity values ranged from 2.90 and 4.63 and do not therefore deviate from the results obtained by Corley,6 whereas some 14 items have mean intensity values of 4 or higher. The reliability of the instrument used in the research presented here was calculated using Cronbach’s alpha. Test retest reliability data are not present because the data could not be collected in the study time-frame. The results obtained by Cronbach’s alpha for the MDS are in line with those obtained in previous studies, in 2001 an alpha equal to 0.96 was obtained for the whole instrument and in 2005 the values were 0.98 (intensity) and 0.90 (frequency).4,6 This study was the first in Italy to translate and validate the MDS-PV and to test the scale on a specific sample of nurses. In the future, we aim to repeat the study in all Italian paediatric haematology and oncology centres. Before conducting the second part of the study, it will be necessary to change the first part of the scale asking respondents to indicate the intensity of moral distress: as we have seen, nurses must be prevented from indicating intensity values when the situation does not arise, as this results in an ‘abnormal’ increase in intensity. Unfortunately, this difficulty did not arise in the initial pre-test phase.

Conclusion This article is the start of a far broader project that will involve the use of the MDS-PV in a nationwide study in the future. Specifically, the aim was to use the scale in a very specialistic setting with very ‘delicate’ caregiving aspects. When working in the paediatric oncology and haematology sector, it is impossible to avoid the issue of end of life and pain control in children and it is impossible to overlook the nurse–doctor–parent– child relationship, the basis underlying all care-related decisions and caring for the young patients. In its 33 items, the MDS-PV takes into consideration these aspects facing the paediatric haematology and/or oncology nurse, which is why it has been chosen in literature to measure the ethical and/or moral unease that nurses often encounter. The results of moral distress study provide food for thought and fuel for action. The food for thought is as follows: by the individual nurse who, having given a name to this type of ‘unease’, wonders about how to treat and, above all, prevent it. In this sense, literature provides a series of starting points from different authors and international nursing associations.24,28–30 Also, the unit in which the nurse works and the team he/she belongs to are forced to take ethical and moral decisions concerning the young patient (nursing coordinator, doctors, psychologists). The institution, its management and the professional order and national and international associations of the specific area in which the nurse works are implicated to be spokespersons to disseminate and stimulate action in moral distress. Moreover, moral distress is not a concept that remains isolated for the nurse, rather it is related to responsibility and competence, which is why so many MDS-PV items describe situations connected to these contexts. In the Italian nursing scenario, there are no published studies on the subject or studies using the MDS or MDS-PV and, therefore, a first step must be made in the diffusion of the concept of moral distress, which is still unknown to many. The MDS-PV was developed specifically for pediatric nurses; some modification would be needed should it be applied to nurses in other countries (in Italy it was necessary to remove five items). However, almost all items on the MDS-PV could be used to compare moral distress among pediatric nurses elsewhere.

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Acknowledgements The authors gratefully acknowledge Professor Mary C Corley for her encouragement and advice in the conduct of this study. Funding This research received no specific grant from any funding agency in the public, commercial, or not-forprofit sectors. Conflict of interest statement No conflict of interest has been declared by the authors. References 1. Jameton A. Nursing practice: the ethical issues. Englewood Cliffs, NJ: Prentice-Hall, 1984. 2. Davies B, Clarke D, Connaughty S, Cook K, MacKenzie B, McCormick J, O’Loane M and Stutzer C. Caring for dying children: nurses’ experiences. Pediatr Nurs 1996; 22(6): 500–7. 3. Corley MC. Nurse moral distress: a proposed theory and research agenda. Nurs Ethics 2002; 9(6): 636–50. 4. Corley MC, Elswick RK, Gorman M and Clor T. Development and evaluation of a moral distress scale. J Adv Nurs 2001; 33(2): 250–6. 5. Georges J-J and Grypdonck M. Moral problems experienced by nurses when caring for terminally ill people: a litterature review. Nurs Ethics 2002; 9(2): 156–78. 6. Corley MC, Minick P, Elswick RK and Jacobs M. Nurse moral distress and ethical work environment. Nurs Ethics 2005;12(4): 381–90. 7. Wilkinson JM. Moral distress in nursing practice: experience and effect. Nurs Forum 1988; 23(1): 16–29. 8. Raines ML. Ethical decision making in nurses: relationships among moral reasoning, coping style and ethics stress. JONAS Healthc Law Ethics Reg 2000; 2(1): 29–41. 9. Elpern EH, Covert B and Kleinpell R. Moral distress of staff nurses in a medical intensive care unit. Am J Crit Care 2005; 14(6): 523–30. 10. Nathaniel AK. Moral reckoning in nursing. West J Nurs Res 2006; 28: 419–38. 11. Redman BK and Fry ST. Nurses’ ethical conflicts: what is really known about them? Nurs Ethics 2000; 7(4): 360–6. 12. Cohen JS and Erickson JM. Ethical dilemmas and moral distress in oncology nursing practice. Clin J Oncol Nurs 2006; 10(6): 775–82. 13. Janvier A, Nadeau S, Descheˆnes M, Couture E and Barrington KJ. Moral distress in the neonatal intensive care unit: caregiver’s experience. J Perinatol 2007; 27(4): 203–8. 14. Chiu PP, Hilliard RI, Azzie G and Fecteau A. Experience of moral distress among pediatric surgery trainees. J Pediatric Surgery 2008; 43(6):986–93. 15. Rice ME, Rady MY, Hamrick A, Verheijde LJ and Pendergast DK. Determinants of moral distress in medical and surgical nurses at an adult acute tertiary care hospital. J Nurs Manag 2008; 16: 360–73. 16. Zuzelo PR. Exploring the moral distress of registered nurses. Nurs Ethics 2007; 14(3): 344–59. 17. Gutierrez KM. Critical care nurses’ perceptions of and responses to moral distress. Dimens Crit Care Nurs 2005; 24(5): 229–41. 18. Kalvemark S, Hoglund A, Mats GH, Westerholm P and Arnetz B. Living with conflicts-ethical dilemmas and moral distress in the health care system. Soc Sci Med 2004; 58: 1075–84. 19. Schluter J, Winch S, Holzhauser K and Henderson A. Nurses’ moral sensitivity and hospital ethical climate: a literature review. Nurs Ethics 2008;15(3): 304–21. 20. McCarthy J and Deady R. Moral distress reconsidered. Nursing Ethics 2008; 15(2): 254–62.

Lazzarin et al.

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21. Austin W, Lemermeyer G, Goldberg L, Bergum V and Johnson M. Moral distress in healthcare practice. Alta RN 2008; 64(4): 4–5. 22. Rushton CH. Defining and addressing moral distress: tools for critical care nursing leaders. AACN AdvCrit Care Nurs 2006; 17(2):161–8. 23. Bell J and Breslin J. Healthcare provider moral distress as a leadership challenge. JONA’S Healthc Law Ethics Reguln 2008 10(4): 94–7. 24. AACN Ethics Work Group. The 4A’s to rise above moral distress. http://www.aacn.org/WD/Practice/Docs/4As_ to_Rise_Above_Moral_Distress.pdf (2006, accessed January 2009). 25. Pedrabissi L and Santinelllo M. I test psicologici. Teorie e tecniche. Bologna: Il Mulino, 1997. 26. Maneesriwongul W and Dixon JK. Instrument translation process: a methods review. J Adv Nurs 2004; 48(2): 175–86. 27. Corley M. Moral distress of critical care nurses. Am J Crit Care 1995; 4(4): 280–5. 28. Erlen JA. Moral distress: a pervasive problem. Orthop Nurs 2001; 20(2): 76–80. 29. CNA (Canadian Nurses Association). Ethical distress in health care environments. Ethics in practice for registered nurses. http://www.cna-aiic.ca/cna/documents/pdf/publications/Ethics_Pract_Ethical_Distress_Oct_2003_e.pdf (2003, accessed January 2009). 30. CNA (Canadian Nurses Association). Code of ethics for register nurses. http://www.cna-nurses.ca/CNA/practice/ ethics/code/default_e.aspx (2008, accessed June 2009).

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