Moral distress in paediatric oncology: Contributing factors and group differences

2018 ◽  
Vol 26 (7-8) ◽  
pp. 2351-2363 ◽  
Author(s):  
Pernilla Pergert ◽  
Cecilia Bartholdson ◽  
Klas Blomgren ◽  
Margareta af Sandeberg
Keyword(s):  
Healthcare Professionals ◽  
Moral Distress ◽  
Ethical Issues ◽  
Paediatric Oncology ◽  
National Study ◽  
Ethical Review ◽  
Contributing Factors ◽  
High Turnover ◽  
Scale Scores ◽  
Distress Scale

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.

scholarly journals Ethical climate and moral distress in paediatric oncology nursing

2021 ◽  
pp. 096973302199416
Author(s):  
Päivi Ventovaara ◽  
Margareta af Sandeberg ◽  
Janne Räsänen ◽  
Pernilla Pergert
Keyword(s):  
Ethical Climate ◽  
Moral Distress ◽  
Ethical Issues ◽  
Paediatric Oncology ◽  
Study Data ◽  
Ethical Review ◽  
Oncology Nursing ◽  
Ethical Behaviour ◽  
Cross Sectional ◽  
Distress Scale

Background: Ethical climate and moral distress have been shown to affect nurses’ ethical behaviour. Despite the many ethical issues in paediatric oncology nursing, research is still lacking in the field. Research aim: To investigate paediatric oncology nurses’ perceptions of ethical climate and moral distress. Research design: In this cross-sectional study, data were collected using Finnish translations of the Swedish Hospital Ethical Climate Survey–Shortened and the Swedish Moral Distress Scale–Revised. Data analysis includes descriptive statistics and non-parametric analyses. Respondents and research context: Ninety-three nurses, working at paediatric oncology centres in Finland, completed the survey. Ethical considerations: According to Finnish legislation, no ethical review was needed for this type of questionnaire study. Formal research approvals were obtained from all five hospitals. Return of the questionnaire was interpreted as consent to participate. Results: Ethical climate was perceived as positive. Although morally distressing situations were assessed as highly disturbing, in general they occurred quite rarely. The situations that did appear often reflected performing procedures on school-aged children who resist such treatment, inadequate staffing and lack of time. Perceptions of ethical climate and frequencies of morally distressing situations were inversely correlated. Discussion: Although the results echo the recurrent testimonies of busy work shifts, nurses could most often practise nursing the way they perceived as right. One possible explanation could be the competent and supportive co-workers, as peer support has been described as helpful in mitigating moral distress. Conclusion: Nurturing good collegial relationships and developing manageable workloads could reduce moral distress among nurses.

scholarly journals Important situations that capture moral distress in paediatric oncology

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Margareta af Sandeberg ◽  
Cecilia Bartholdson ◽  
Pernilla Pergert
Keyword(s):  
Internal Consistency ◽  
Moral Distress ◽  
Paediatric Oncology ◽  
Nursing Assistants ◽  
Ethical Review ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Professional Groups ◽  
Good Internal Consistency ◽  
Distress Scale

Abstract 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.

Moral distress in nurses in oncology and haematology units

2012 ◽  
Vol 19 (2) ◽  
pp. 183-195 ◽  
Author(s):  
Michela Lazzarin ◽  
Andrea Biondi ◽  
Stefania Di Mauro
Keyword(s):  
Moral Distress ◽  
Ethical Issues ◽  
Paediatric Oncology ◽  
Small Scale ◽  
Mean Intensity ◽  
Original Language ◽  
Nursing Competence ◽  
Almost All ◽  
Distress Scale ◽  
Conventional Sample

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 Scale-Paediatric 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 = 0.959). This study represents the first small-scale attempt to validate MDS-PV for use in paediatric oncology-ematology nurses in Italy.

Healthcare professionals’ perceptions of the ethical climate in paediatric cancer care

2016 ◽  
Vol 23 (8) ◽  
pp. 877-888 ◽  
Author(s):  
Cecilia Bartholdson ◽  
Margareta af Sandeberg ◽  
Kim Lützén ◽  
Klas Blomgren ◽  
Pernilla Pergert
Keyword(s):  
Ethical Climate ◽  
Healthcare Professionals ◽  
Ethical Issues ◽  
Ethical Review ◽  
Good Care ◽  
Moral Stress ◽  
Paediatric Hospital ◽  
Ethics Support ◽  
Ethical Conflicts ◽  
Nurse Aides

Background: How well ethical concerns are handled in healthcare is influenced by the ethical climate of the workplace, which in this study is described as workplace factors that contribute to healthcare professionals’ ability to identify and deal with ethical issues in order to provide the patient with ethically good care. Objectives: The overall aim of the study was to describe perceptions of the paediatric hospital ethical climate among healthcare professionals who treat/care for children with cancer. Research design: Data were collected using the Hospital Ethical Climate Survey developed by Olsson as a separate section in a questionnaire. Descriptive statistics were used to analyse perceptions of the ethical climate. Participants and research context: Physicians, nurses and nurse-aides (n = 89) from three paediatric units participated in this study: haematology/oncology, chronic diseases and neurology. Ethical considerations: The study was approved by the regional ethical review board. Findings: Different perceptions of the ethical climate were rated as positive or negative/neutral. Nurses’ ratings were less positive than physicians on all items. One-third of the participants perceived that they were able to practice ethically good care as they believed it should be practised. Discussion: Differences in professional roles, involving more or less power and influence, might explain why physicians and nurses rated items differently. A positive perception of the possibility to practice ethically good care seems to be related to inter-professional trust and listening to guardians/parents. A negative/neutral perception of the possibility to practice ethically good care appears to be influenced by experiences of ethical conflicts as well as a lack of ethical support, for example, time for reflection and discussion. Conclusion: The two-thirds of participants who had a negative/neutral perception of the possibility to practice ethically good care are at risk of developing moral stress. Clinical ethics support needs to be implemented in care where important values are at stake.

University Research Ethics Committees — A Summary of Research into Their Role, Remit and Conduct

2005 ◽  
Vol 1 (1) ◽  
pp. 5-11 ◽  
Author(s):  
Anthea Tinker ◽  
Vera Coomber
Keyword(s):  
Ethical Issues ◽  
Human Subjects ◽  
Ethics Committees ◽  
National Study ◽  
Ethical Review ◽  
The United Kingdom ◽  
Human Volunteers ◽  
Research On Human Subjects ◽  
The University ◽  
Research Councils

As society becomes more aware of the rights of individuals, ethical issues become of increasing importance. Many research funders, including the research councils, increasingly emphasise research governance and ethical review in their consideration of submitted proposals. Little is known, however, about what universities do over ethical scrutiny and in order to find out the authors undertook a national study of all universities in the United Kingdom. The focus of the study was on human volunteers for research outside the remit of the National Health Service. The key questions being: to what extent do universities undertake ethical scrutiny of research and, if so, how? The broad conclusion is that when this survey was carried out in the autumn of 2003, the majority of universities were aware of the need for the ethical scrutiny of research on human subjects although in many of those universities the scrutiny system was being developed at the time of completion of the questionnaire. In some cases practice appeared to lag behind awareness and whilst there were some very good examples there were also some which were below an ‘acceptable’ standard. Recommendations are made concerning structures, coverage and membership for systems of ethical scrutiny within the university sector.

Healthcare professionals’ moral distress in adult palliative care: a systematic review

2019 ◽  
Vol 9 (3) ◽  
pp. 245-254 ◽  
Author(s):  
Marina Maffoni ◽  
Piergiorgio Argentero ◽  
Ines Giorgi ◽  
Julia Hynes ◽  
Anna Giardini
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Moral Distress ◽  
Ethical Issues ◽  
Well Being ◽  
Personal Factors ◽  
Care Providers ◽  
Holistic Model ◽  
Cognitive Behavioural ◽  
Enhance Patient Care

ObjectivesPalliative care providers may be exposed to numerous detrimental psychological and existential challenges. Ethical issues in the healthcare arena are subject to continual debate, being fuelled with ongoing medical, technological and legal advancements. This work aims to systematically review studies addressing the moral distress experienced by healthcare professionals who provide adult palliative care.MethodsA literature search was performed on PubMed, Scopus, Web of Science and PsycINFO databases, searching for the terms ‘moral distress’ AND ‘palliative care’. The review process has followed the international PRISMA statement guidelines.ResultsThe initial search identified 248 papers and 10 of them were considered eligible. Four main areas were identified: (1) personal factors, (2) patients and caregivers, (3) colleagues and superiors and (4) environment and organisation. Managing emotions of self and others, witnessing sufferance and disability, caring for highly demanding patients and caregivers, as well as poor communication were identified as distressing. Moreover, the relationship with colleagues and superiors, and organisational constraints often led to actions which contravened personal values invoking moral distress. The authors also summarised some supportive and preventive recommendations including self-empowerment, communication improvement, management of emotions and specific educational programmes for palliative care providers. A holistic model of moral distress in adult palliative care (integrating emotional, cognitive, behavioural and organisational factors) was also proposed.ConclusionsCognisance of risk and protective factors associated with the moral distress phenomenon may help reframe palliative healthcare systems, enabling effective and tailored actions that safeguard the well-being of providers, and consequently enhance patient care.

Moral distress in veterinarians

2019 ◽  
Vol 185 (20) ◽  
pp. 631-631 ◽  
Author(s):  
Alejandra I Arbe Montoya ◽  
Susan Hazel ◽  
Susan M Matthew ◽  
Michelle L McArthur
Keyword(s):  
Healthcare Professionals ◽  
Moral Distress ◽  
Mental Health Problems ◽  
Psychological State ◽  
Negative Consequences ◽  
Ethical Challenges ◽  
Limited Data ◽  
Medical Field ◽  
Modifying Factors ◽  
Distress Scale

Moral distress is a psychological state of anguish that has been widely studied in healthcare professionals. Experiencing moral distress can lead to problems including avoidance of patients and increased staff turnover. Moral distress in veterinarians has not yet been explored to the extent seen in the human medical field, and there is limited data regarding moral distress in veterinarians. However, it is expected to be prevalent in these professionals. So far, it has been reported that veterinarians commonly experience moral conflict, ethical challenges and ethical dilemmas during their career. These conflicts in association with other modifying factors such as personality traits can lead to the experience of moral distress. In a profession with known levels of occupational stress and reported mental health problems, exploring the area of moral distress and its effects on the professional wellbeing of veterinarians is important. Further studies such as developing a moral distress scale to measure this issue are needed in order to evaluate the incidence of this problem in veterinary professionals. Furthermore, assessing a possible relationship between moral distress, mental illness and attrition in veterinarians would be useful in developing intervention strategies to minimise the experience of moral distress and its associated negative consequences in veterinarians.

Clarifying perspectives

2015 ◽  
Vol 23 (4) ◽  
pp. 421-431 ◽  
Author(s):  
Cecilia Bartholdson ◽  
Kim Lützén ◽  
Klas Blomgren ◽  
Pernilla Pergert
Keyword(s):  
Childhood Cancer ◽  
Cancer Care ◽  
Healthcare Professionals ◽  
Ethical Issues ◽  
Pediatric Care ◽  
Ethical Review ◽  
Ethical Concerns ◽  
Making Sense ◽  
Care Approach ◽  
The Common

Background: Childhood cancer care involves many ethical concerns. Deciding on treatment levels and providing care that infringes on the child’s growing autonomy are known ethical concerns that involve the whole professional team around the child’s care. Objectives: The purpose of this study was to explore healthcare professionals’ experiences of participating in ethics case reflection sessions in childhood cancer care. Research design: Data collection by observations, individual interviews, and individual encounters. Data analysis were conducted following grounded theory methodology. Participants and research context: Healthcare professionals working at a publicly funded children’s hospital in Sweden participated in ethics case reflection sessions in which ethical issues concerning clinical cases were reflected on. Ethical considerations: The children’s and their parents’ integrity was preserved through measures taken to protect patient identity during ethics case reflection sessions. The study was approved by a regional ethical review board. Findings: Consolidating care by clarifying perspectives emerged. Consolidating care entails striving for common care goals and creating a shared view of care and the ethical concern in the specific case. The inter-professional perspectives on the ethical aspects of care are clarified by the participants’ articulated views on the case. Different approaches for deliberating ethics are used during the sessions including raising values and making sense, leading to unifying interactions. Discussion: The findings indicate that ethical concerns could be eased by implementing ethics case reflection sessions. Conflicting perspectives can be turned into unifying interactions in the healthcare professional team with the common aim to achieve good pediatric care. Conclusion: Ethics case reflection sessions is valuable as it permits the discussion of values in healthcare-related issues in childhood cancer care. Clarifying perspectives, on the ethical concerns, enables healthcare professionals to reflect on the most reasonable and ethically defensible care for the child. A consolidated care approach would be valuable for both the child and the healthcare professionals because of the common care goals.

Development and evaluation of a moral distress scale

2001 ◽  
Vol 33 (2) ◽  
pp. 250-256 ◽  
Author(s):  
Mary C. Corley ◽  
R. K. Elswick ◽  
Martha Gorman ◽  
Theresa Clor
Keyword(s):  
Moral Distress ◽  
Distress Scale

The Ethics of AI in Biomedical Research, Patient Care, and Public Health

2020 ◽  
pp. 702-718 ◽  
Author(s):  
Alessandro Blasimme ◽  
Effy Vayena
Keyword(s):  
Public Health ◽  
Patient Care ◽  
Biomedical Research ◽  
Disease Surveillance ◽  
Ethical Issues ◽  
Ethical Review ◽  
Ethical Challenges ◽  
Healthcare Provision ◽  
Social Scientists ◽  
Ethical Frameworks

This chapter explores ethical issues raised by the use of artificial intelligence (AI) in the domain of biomedical research, healthcare provision, and public health. The litany of ethical challenges that AI in medicine raises cannot be addressed sufficiently by current regulatory and ethical frameworks. The chapter then advances the systemic oversight approach as a governance blueprint, which is based on six principles offering guidance as to the desirable features of oversight structures and processes in the domain of data-intense biomedicine: adaptivity, flexibility, inclusiveness, reflexivity, responsiveness, and monitoring (AFIRRM). In the research domain, ethical review committees will have to incorporate reflexive assessment of the scientific and social merits of AI-driven research and, as a consequence, will have to open their ranks to new professional figures such as social scientists. In the domain of patient care, clinical validation is a crucial issue. Hospitals could equip themselves with “clinical AI oversight bodies” charged with the task of advising clinical administrators. Meanwhile, in the public health sphere, the new level of granularity enabled by AI in disease surveillance or health promotion will have to be negotiated at the level of targeted communities.

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