Moral distress and ethical climate in pediatric oncology care impact healthcare professionals' intentions to leave.

OBJECTIVE: To assess perceptions of ethical climate, experiences of moral distress, and intentions to leave among healthcare professionals in Nordic pediatric oncology care. METHODS: A cross-sectional survey with registered nurses, physicians, and nursing assistants at 20 Nordic pediatric cancer centers. Data were collected by using translated versions of the Swedish Hospital Ethical Climate Survey-Shortened and the Swedish Moral Distress Scale-Revised. Descriptive analyses and non-parametric tests were used to describe, summarize, and compare data. RESULTS: According to 543 healthcare professionals (response rate 58%), the ethical climate in Nordic pediatric oncology care was positive. Inadequate staffing levels, poor continuity and lack of time were the most common causes of moral distress. Registered nurses experienced significantly higher levels of moral distress compared to physicians and nursing assistants. About 6% of the respondents considered leaving due to moral distress. Typically, they assessed the ethical climate as less positive and reported higher levels of moral distress than those who had no intention to leave. CONCLUSIONS: Organizational actions that ensure safe staffing levels and improve the continuity of care are needed to prevent moral distress and high staff turnover.

A cross-sectional survey of moral distress and ethical climate - Situations in paediatric oncology care that involve children's voices.

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.

Important situations that capture moral distress in paediatric oncology.

BACKGROUND: The paediatric Moral Distress Scale-Revised (MDS-R) was previously translated and adapted to Swedish 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' unrealistic expectations, 24) Not to talk about death with a dying child, 25) To perform painful procedures, 26) To decide on treatment/care when uncertain. The aim was to explore experiences of moral distress in the five added situations in the 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, were used. Descriptive statistics, non-parametric analysis of differences between professions and a MDS-R score for each item 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 had no objections. Consent was assumed when the survey was returned. RESULTS: Nursing assistants (NAs) reported higher intensity and lower frequency on all added items; registered nurses (RNs) reported a higher frequency on item 22-25; medical doctors (MDs) reported higher MDS-R score on item 26. On item 22, intensity was moderate for RNs and MDs and high for NAs, and frequency was high among all. Item 22, had the second highest MDS-R score of all 26 for all professional groups. On item 23, the level of disturbance was low but it occurred often. The 26-item version showed good internal consistency for the overall sample and for all professional groups. However, item 22 and 24 could be viewed as redundant to two of the original 21. CONCLUSION: In accordance with other studies, the intensity was higher than the frequency, however, the frequency of the added items was higher than of the original items. In line with previous research, item 22 and 23 are important elements of moral distress. RNs experience the situations more often while NAs find them more disturbing. The results indicate that the added items are important in capturing moral distress in paediatric oncology.

The ethical climate in paediatric oncology-A national cross-sectional survey of health-care personnel.

OBJECTIVE: To describe health-care personnel's (HCP's) perceptions of the ethical climate at their workplace in paediatric oncology. METHODS: A cross-sectional survey was conducted using the Swedish version of the shortened Hospital Ethical Climate Survey (HECS-S). HCP at all six paediatric oncology centres (POCs) in Sweden were invited to participate. Analysis included descriptive statistics, the Mann-Whitney U test (differences between groups) and Spearman's rank correlation. Informed consent was assumed when the respondents returned the survey. RESULTS: A high response rate was achieved as 278 HCP answered the questionnaire. Medical doctors perceived the ethical climate to be more positive than registered nurses and nursing assistants. At the POC with the significantly lowest values concerning immediate manager, no significant correlation with the other items was found. At the POC with the poorest ethical climate, HCP also had the lowest perception of the possibility of practicing ethically good care. CONCLUSIONS: Differences between centres and professional groups have been demonstrated. A negative perception of the immediate manager does not necessarily mean that the ethical climate is poor, but the manager's ability to provide the conditions for an open dialogue within the health-care team is key to achieving an ethical climate.

Early central line-associated blood stream infections in children with cancer pose a risk for premature catheter removal.

AIM: This study examined the clinical characteristics of central line-associated blood stream infections occurring within 30 days after insertion versus later infections in paediatric cancer patients and the subsequent risk for premature catheter removal. METHODS: This was a retrospective study of children aged 0-18 years who were diagnosed with cancer from 2013 to 2014 at the Astrid Lindgren Children Hospital, Sweden. Clinical and microbiology data for each patient were collected for 365 days after the central venous catheter (CVC) was inserted. RESULTS: During the study period, 154 children received a CVC. The overall incidence of central line associated blood stream infections was 2.0 per 1000 catheter days. A total of 108 infectious episodes were identified in 44/154 (29%) patients. Of those, 15/44 children (29%) had an early infection within 30 days and alpha-haemolytic Streptococci and coagulase-negative Staphylococci dominated. Children with early infections were more likely to have a haematological malignancy and to need premature removal of the CVC due to repeated infections. CONCLUSION: We observed a high prevalence of early CVC associated blood stream infection mainly in patients with haematological malignancies. Our study highlights the importance of preventive measures in reducing infections in paediatric cancer patients.

Moral distress in paediatric oncology: Contributing factors and group differences.

BACKGROUND: Providing oncological care to children is demanding and ethical issues concerning what is best for the child can contribute to moral distress. OBJECTIVES: To explore healthcare professionals' experiences of situations that generate moral distress in Swedish paediatric oncology. RESEARCH DESIGN: In this national study, data collection was conducted using the Swedish Moral Distress Scale-Revised. The data analysis included descriptive statistics and non-parametric analysis of differences between groups. PARTICIPANTS AND RESEARCH CONTEXT: Healthcare professionals at all paediatric oncology centres in Sweden were invited to participate. A total of 278 healthcare professionals participated. The response rate was 89%. ETHICAL CONSIDERATIONS: In its advisory statement, the Regional Ethical Review Board decided that the study was of such a nature that the legislation concerning ethical reviews was not applicable. All participants received written information about the aim of the study and confidentiality. Participants demonstrated their consent by returning the survey. FINDINGS: The two situations with the highest moral distress scores concerned lack of competence and continuity of personnel. All professional groups reported high levels of disturbance. Nurses rated significantly higher frequencies and higher total Moral Distress Scale scores compared to medical doctors and nursing assistants. DISCUSSION: Lack of competence and continuity, as the two most morally distressing situations, confirms the findings of studies from other countries, where inadequate staffing was reported as being among the top five morally distressing situations. The levels of total Moral Distress Scale scores were more similar to those reported in intensive care units than in other paediatric care settings. CONCLUSION: The two most morally distressing situations, lack of competence and continuity, are both organisational in nature. Thus, clinical ethics support services need to be combined with organisational improvements in order to reduce moral distress, thereby maintaining job satisfaction, preventing a high turnover of staff and ensuring the quality of care.

Translating and culturally adapting the shortened version of the Hospital Ethical Climate Survey (HECS-S) - retaining or modifying validated instruments.

BACKGROUND: The Hospital Ethical Climate Survey (HECS) was developed in the USA and later shortened (HECS-S). HECS has previously been translated into Swedish and the aim of this study was to describe a process of translating and culturally adapting HECS-S and to develop a Swedish multi-professional version, relevant for paediatrics. Another aim was to describe decisions about retaining versus modifying the questionnaire in order to keep the Swedish version as close as possible to the original while achieving a good functional level and trustworthiness. METHODS: In HECS-S, the respondents are asked to indicate the veracity of statements. In HECS and HECS-S the labels of the scale range from 'almost never true' to 'almost always true'; while the Swedish HECS labels range from 'never' to 'always'. The procedure of translating and culturally adapting the Swedish version followed the scientific structure of guidelines. Three focus group interviews and three cognitive interviews were conducted with healthcare professionals. Furthermore, descriptive data were used from a previous study with healthcare professionals (n = 89), employing a modified Swedish HECS. Decisions on retaining or modifying items were made in a review group. RESULTS: The Swedish HECS-S consists of 21 items including all 14 items from HECS-S and items added to develop a multi-professional version, relevant for paediatrics. The descriptive data showed that few respondents selected 'never' and 'always'. To obtain a more even distribution of responses and keep Swedish HECS-S close to HECS-S, the original labels were retained. Linguistic adjustments were made to retain the intended meaning of the original items. The word 'respect' was used in HECS-S with two different meanings and was replaced in one of these because participants were concerned that respecting patients' wishes implied always complying with them. CONCLUSIONS: The process of developing a Swedish HECS-S included decisions on whether to retain or modify. Only minor adjustments were needed to achieve a good functional level and trustworthiness although some items needed to be added. Adjustments made could be used to also improve the English HECS-S. The results shed further light on the need to continuously evaluate even validated instruments and adapt them before use.

To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised (MDS-R).

BACKGROUND: Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised (MDS-R) is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction. METHODS: The procedure included linguistic translation and cultural adaptation of MDS-R's paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care. RESULTS: To achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens. CONCLUSIONS: Translation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients.

Confidence and authority through new knowledge: An evaluation of the national educational programme in paediatric oncology nursing in Sweden.

BACKGROUND: There is a lack of nurse specialists in many paediatric hospitals in Sweden. This lack of competence is devastating for childhood cancer care because it is a highly specialised area that demands specialist knowledge. Continuing education of nurses is important to develop nursing practice and also to retain them. OBJECTIVES: The aim of this study was to evaluate a Swedish national educational programme in paediatric oncology nursing. SETTINGS AND PARTICIPANTS: The nurses who participated came from all of the six paediatric oncology centres as well as from general paediatric wards. At the time of the evaluation, three groups of registered nurses (n=66) had completed this 2year, part-time educational programme. DESIGN AND METHODS: A study specific questionnaire, including closed and open-ended questions was sent to the 66 nurses and 54 questionnaires were returned. Answers were analysed using descriptive statistics and qualitative content analysis. RESULTS: The results show that almost all the nurses (93%) stayed in paediatric care after the programme. Furthermore, 31% had a position in management or as a consultant nurse after the programme. The vast majority of the nurses (98%) stated that the programme had made them more secure in their work. The nurses were equipped, through education, for paediatric oncology care which included: knowledge generating new knowledge; confidence and authority; national networks and resources. They felt increased confidence in their roles as paediatric oncology nurses as well as authority in their encounters with families and in discussions with co-workers. New networks and resources were appreciated and used in their daily work in paediatric oncology. CONCLUSIONS: The programme was of importance to the career of the individual nurse and also to the quality of care given to families in paediatric oncology. The national educational programme for nurses in Paediatric Oncology Care meets the needs of the highly specialised care.

Perceptions of School Among Childhood Cancer Survivors: A Comparison With Peers.

The aim was to investigate how childhood cancer survivors perceive school and whether their perceptions differ from corresponding descriptions of peers. Survivors (n = 48) currently attending educational institutions (median 5 years post diagnosis; now aged 12-21 years) from a national cohort of school-age children were compared with matched peers (n = 47). Data were collected through interviews and analyzed qualitatively and quantitatively. The results indicate that survivors and peers perceive school similarly; almost 90% described high well-being in school and indicated that they were motivated and received no additional tutoring; approximately 60% reported no difficulties achieving learning objectives. A few differences were found; survivors described themselves as more satisfied with their academic performance and school environment, but less satisfied with friends, than peers did. Previous treatment with radiation was associated with lower academic satisfaction among survivors. It is suggested that survivors perceive school overall as positive and do not have more problems reaching educational goals than their peers. However, quality of relationships with friends needs further investigation.

Survivors of childhood cancer report high levels of independence five years after diagnosis.

The aim was to compare self-rated independence in childhood cancer survivors 5 years after diagnosis with corresponding ratings during initial cancer treatment and those in a comparison group. A further aim was to determine whether and how certain clinical and demographic variables affected self-rated independence. Self-rated independence, a dimension included in the health-related quality of life (HRQoL) measure DISABKIDS Chronic Generic Measure (DCGM-37), was assessed in a Swedish cohort of survivors (n = 63, aged 12-22 years) and compared with ratings during initial cancer treatment and those in an age-matched comparison group (n = 257). Potential predictors of self-rated independence were estimated using multiple regression analysis. Survivors rated their independence significantly higher 5 years after diagnosis than during initial cancer treatment and higher than the comparison group. Neither demographic nor clinical variables (age, sex, diagnosis, initial cancer treatment) predicted self-rated independence 5 years post diagnosis. Five years after diagnosis, survivors of childhood cancer appear to have reached a satisfactory level of independence. However, survivors are likely to experience complications over the longer term, and therefore continued follow-up is warranted to follow possible changes in self-reported independence.

Does school attendance during initial cancer treatment in childhood increase the risk of infection?

BACKGROUND: The present study aimed to investigate the relationship between school attendance and infection requiring antimicrobial treatment in children undergoing treatment for cancer. PROCEDURE: A national cohort of children aged 7-16 years undergoing cancer treatment was assessed during two observation periods of 19 days each, 1 month (n = 89) and 2.5 months (n = 89) poststart of treatment. Children free from infection at start of each observation period were included. Multivariable logistic regression analyses were performed including factors potentially associated with start of antimicrobial treatment. RESULTS: Twenty-seven (30%) children started antimicrobial treatment during the first observation period. Factors associated with an increased risk of starting antimicrobial treatment were diagnosed with sarcoma (OR = 24.37, P = 0.002) or non-Hodgkin lymphoma (OR = 17.57, P = 0.025), having neutropenia (OR = 5.92, P = 0.020) and age less than 13 years (OR = 8.54, P = 0.014). During the second observation period, when 20 (22%) children started antimicrobial treatment, the probability of starting treatment was increased in children with neutropenia (OR = 4.25, P = 0.007). There was no statistically significant association between starting treatment for infection and school attendance. CONCLUSIONS: In this study, children attending school while undergoing cancer treatment did not run a higher risk of starting antimicrobial treatment than children absent from school. However, there is a need for further studies evaluating risk of infections in children with ongoing cancer treatment.

Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer.

BACKGROUND: The aim was to evaluate data quality and psychometric properties of an instrument for measurement of health-related quality of life: DISABKIDS Chronic Generic Module (DCGM-37) used in school-aged children with cancer. METHODS: All school-children diagnosed with cancer in Sweden during a two-and-a-half year period were invited to participate in the study. Analysis was performed on combined data from two assessments, two and-a-half and five months after start of cancer treatment (n = 170). The instrument was examined with respect to feasibility, data quality, reliability and construct and criterion-based validity. RESULTS: Missing items per dimension ranged from 0 to 5.3 percent, with a majority below three percent. Cronbach's alpha values exceeded 0.70 for all dimensions. There was support for the suggested groupings of items into dimensions for all but six of the 36 items of the DCGM-37 included in this study. The instrument discriminated satisfactorily between diagnoses reflecting treatment burden. CONCLUSIONS: The results indicate satisfactory data quality and reliability of the DCGM-37 when used in children undergoing treatment for cancer. Evaluation of construct validity showed generally acceptable results, although not entirely supporting the suggested dimensionality. Continued psychometric evaluation in a larger sample of children during and after treatment for cancer is recommended.

Health-related quality of life relates to school attendance in children on treatment for cancer.

The aims of this study are to follow health-related quality of life (HRQOL), school attendance, and social interaction with friends in children with cancer and to explore potential relationships between HRQOL and school attendance. The study also describes self-reported reasons for not attending school and not meeting friends. During a 2-year period, all schoolchildren in Sweden starting treatment for cancer were invited to participate in the study. Participants (N = 101) were assessed 3 times during the first 5 months of treatment using 2 questionnaires: DISABKIDS Chronic Generic Module (DCGM-37) and a study-specific questionnaire. The results indicate a diminished HRQOL that remained stable over the study period, with girls rating worse HRQOL compared with boys. School attendance significantly increased over time, and approximately half of the children attended school 5 months after start of treatment. Self-reported HRQOL was positively correlated to days of school attendance. The results emphasize the importance of psychosocial care and nursing for children diagnosed with cancer, especially for girls. Research to further explore gender differences in HRQOL among children diagnosed for cancer is recommended.