Clarifying perspectives

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.

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Ethics case reflection sessions: Enablers and barriers

Nursing Ethics ◽

10.1177/0969733017693471 ◽

2017 ◽

Vol 25 (2) ◽

pp. 199-211 ◽

Cited By ~ 6

Author(s):

Cecilia Bartholdson ◽

Bert Molewijk ◽

Kim Lützén ◽

Klas Blomgren ◽

Pernilla Pergert

Keyword(s):

Childhood Cancer ◽

Cancer Care ◽

Healthcare Professionals ◽

Ethical Review ◽

Main Concern ◽

Ethical Considerations ◽

New Knowledge ◽

Ethical Skills ◽

Professional Perspectives

Background: In previous research on ethics case reflection (ECR) sessions about specific cases, healthcare professionals in childhood cancer care were clarifying their perspectives on the ethical issue to resolve their main concern of consolidating care. When perspectives were clarified, consequences in the team included ‘increased understanding’, ‘group strengthening’ and ‘decision grounding’. Additional analysis of the data was needed on conditions that could contribute to the quality of ECR sessions. Objective: The aim of this study was to explore conditions for clarifying perspectives during ECR sessions. Research design: Data were collected from observations and interviews and the results emerged from an inductive analysis using grounded theory. Participants and research context: Six observations during ECR sessions and 10 interviews were performed with healthcare professionals working in childhood cancer care and advanced paediatric homecare. Ethical considerations: The study was approved by a regional ethical review board. Participants were informed about their voluntary involvement and that they could withdraw their participation without explaining why. Findings: Two categories emerged: organizational enablers and barriers and team-related enablers and barriers. Organizational enablers and barriers included the following sub-categories: the timing of the ECR session, the structure during the ECR session and the climate during the ECR session. Sub-categories to team-related enablers and barriers were identified as space for inter-professional perspectives, varying levels of ethical skills and space for the patient’s and the family’s perspectives. Discussion: Space for inter-professional perspectives included the dominance of a particular perspective that can result from hierarchical positions. The medical perspective is relevant for understanding the child’s situation but should not dominate the ethical reflection. Conclusion: Conditions for ECR sessions have been explored and the new knowledge can be used when training facilitators as well as for those who organize/implement ECR sessions. Awareness of space for different perspectives, including the possible medical advantage over the nursing perspective, could reduce the somewhat unilateral attention and contribute to an inter-professionally shared reflection.

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Protecting Family Interests: An Interview Study with Foreign-Born Parents Struggling On in Childhood Cancer Care

International Journal of Pediatrics ◽

10.1155/2012/681301 ◽

2012 ◽

Vol 2012 ◽

pp. 1-7 ◽

Cited By ~ 9

Author(s):

Pernilla Pergert ◽

Solvig Ekblad ◽

Olle Björk ◽

Karin Enskär ◽

Tom Andrews

Keyword(s):

Childhood Cancer ◽

Cancer Care ◽

Main Concern ◽

Theory Approach ◽

Foreign Born ◽

Healthcare Staff ◽

Holistic View ◽

Classic Grounded Theory ◽

The Common ◽

Grounded Theory Approach

Sweden's population is gradually changing to become more multiethnic and diverse and that applies also for recipients of health care, including childhood cancer care. A holistic view on the sick child in the context of its family has always been a cornerstone in childhood cancer care in Sweden. The purpose of this study was to gain knowledge about the experiences and main concern of foreign-born parents in the context of paediatric cancer care. Interviews were performed with eleven foreign-born parents and data were analysed using a classic grounded theory approach. Foreign-born parents often feel in a position of powerless dependence, but family interests are protected in their approaches to interaction with healthcare staff, through cooperation, contesting, and reluctant resigning. Healthcare staff need to listen to foreign-born parents and deal with their concerns seriously to prevent powerless-dependence and work for trustful cooperation in the common fight against childhood cancer.

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Ethics

10.1093/oso/9780197512494.003.0023 ◽

2021 ◽

pp. 323-335

Author(s):

Jack C. Watson II ◽

Brandonn S. Harris ◽

Megan Byrd

Keyword(s):

Ethical Issues ◽

Ethical Standards ◽

Performance Psychology ◽

Vital Importance ◽

Ethical Concerns ◽

Ethical Decisions ◽

The Common ◽

Research Questions ◽

And Performance ◽

Area Of Study

The study of ethics in sport, exercise, and performance psychology (SEPP) has traditionally focused upon the provision of practical suggestions to help practitioners avoid ethical issues. These suggestions stem from reviews of SEPP ethical standards that have been derived from the parent field of psychology. This area of study has been primarily nonempirically based. Therefore, the primary suggestion of this chapter is for the development of a more empirically based study of ethics. There is a need to empirically understand the structural issues that are commonly associated with ethical concerns, the common ethical beliefs and behaviors of practitioners, and the methods used by practitioners to make ethical decisions. The authors propose research questions to be of vital importance to the study of ethics in SEPP.

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Moral distress in paediatric oncology: Contributing factors and group differences

Nursing Ethics ◽

10.1177/0969733018809806 ◽

2018 ◽

Vol 26 (7-8) ◽

pp. 2351-2363 ◽

Cited By ~ 3

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.

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Perceptions of important outcomes of moral case deliberations: a qualitative study among healthcare professionals in childhood cancer care

BMC Medical Ethics ◽

10.1186/s12910-021-00597-4 ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Charlotte Weiner ◽

Pernilla Pergert ◽

Bert Molewijk ◽

Anders Castor ◽

Cecilia Bartholdson

Keyword(s):

Quality Of Care ◽

Childhood Cancer ◽

Clinical Ethics ◽

Cancer Care ◽

Healthcare Professionals ◽

Well Being ◽

Clinical Ethics Support ◽

Ethics Support ◽

Moral Case

Abstract Background In childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for clinical ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe the MCD-related outcomes that healthcare professionals in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden. Methods This study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content validated European MCD Outcomes Instrument, before participating in regular MCDs. Answers to the main open-ended question, included in the questionnaire, was analysed according to systematic text condensation. Results Data was collected from 161 responses from the healthcare professionals. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows: Interprofessional well-being in team interactions on a team level; Professional comfort when dealing with moral challenges on a personal level; and Improved quality of care for the child and the family on a care level. Conclusions Healthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then create relevant working conditions for clinical ethics support.

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Perceptions of Important Outcomes of Ethics Case Reflection Rounds: A Qualitative Study among Healthcare Professionals in Childhood Cancer Care

10.21203/rs.3.rs-24104/v1 ◽

2020 ◽

Author(s):

Charlotte Weiner ◽

Pernilla Pergert ◽

Bert Molewijk ◽

Anders Castor ◽

Cecilia Bartholdson

Keyword(s):

Quality Of Care ◽

Childhood Cancer ◽

Cancer Care ◽

Healthcare Professionals ◽

Well Being ◽

Moral Case Deliberation ◽

Individual Level ◽

Ethics Support ◽

Moral Case

Abstract BACKGROUND: In childhood cancer care, healthcare professionals mustdeal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals want ethics support to help them deal with morally difficult situations.Ethics case reflection (ECR)roundsare one example of ethics support. However, there is little research intohealthcare professionals’ perceptions of important outcomes prior to participation in ethics case reflectionrounds in childhood cancer care. The aim was to explorehealthcare professionals’ perceptions of outcomes of ECR rounds important for handling moral challenges prior to participation in ECR rounds in childhood cancer care.METHODS: This study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians,working at childhood cancer care centres in Sweden, were invited to respond to the translated and content-validated European Moral Case Deliberation questionnaire,before participating in regular ECR rounds. The main open-ended question included in the questionnaire was analysed according to systematic text condensation. RESULTS: Data was collected from 161 responses from the healthcare professionals who were invited to participate. The responses included healthcare professionals’ perceptions of which ethics case reflection round-related outcomes they found important for handling moral challenges. Three different themes of important outcomes emerged from the analysis of the data: Inter-professional wellbeing, Being in a professional comfort zone, and Improved quality of care. The themes are related to teams, individuals and care, respectively.CONCLUSIONS: Healthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. To realize these perceived important outcomes, conditions for ECR rounds need to be improved. The results of this study can be used in future training for facilitators of ECR rounds, as well as providing information to healthcare managers wishing to implement this kind of ethics support.

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

Nursing Ethics ◽

10.1177/0969733015587778 ◽

2016 ◽

Vol 23 (8) ◽

pp. 877-888 ◽

Cited By ~ 13

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.

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Perceptions of important outcomes of moral case deliberations: a qualitative study among healthcare professionals in childhood cancer care

10.21203/rs.3.rs-24104/v3 ◽

2020 ◽

Author(s):

Charlotte Weiner ◽

Pernilla Pergert ◽

Bert Molewijk ◽

Anders Castor ◽

Cecilia Bartholdson

Keyword(s):

Quality Of Care ◽

Childhood Cancer ◽

Cancer Care ◽

Healthcare Professionals ◽

Well Being ◽

Moral Case Deliberation ◽

Individual Level ◽

Ethics Support ◽

Moral Case

Abstract BACKGROUND: In childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe the MCD-related outcomes that HCPs in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden.METHODS: This study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content-validated European Moral Case Deliberation Outcomes Instrument, before participating in regular MCDs. The main open-ended question included in the questionnaire was analysed according to systematic text condensation. RESULTS: Data was collected from 161 responses from the healthcare professionals who were invited to participate. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows: Interprofessional well-being in team interactions on a team level; Professional comfort when dealing with moral challenges on a personal level; and Improved quality of care on a care level. CONCLUSIONS: Healthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then tailor the conditions.

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Perceptions of important outcomes of moral case deliberations: a qualitative study among healthcare professionals in childhood cancer care

10.21203/rs.3.rs-24104/v2 ◽

2020 ◽

Author(s):

Charlotte Weiner ◽

Pernilla Pergert ◽

Bert Molewijk ◽

Anders Castor ◽

Cecilia Bartholdson

Keyword(s):

Quality Of Care ◽

Childhood Cancer ◽

Cancer Care ◽

Healthcare Professionals ◽

Well Being ◽

Moral Case Deliberation ◽

Individual Level ◽

Ethics Support ◽

Moral Case

Abstract BACKGROUND: In childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals want ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe MCD related outcomes that HCPs in childhood cancer care considered important to achieve, before MCDs were implemented, in order to support them in handling moral challenges in every day clinical practice.METHODS: This study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content-validated European Moral Case Deliberation questionnaire, before participating in regular MCDs. The main open-ended question included in the questionnaire was analysed according to systematic text condensation. RESULTS: Data was collected from 161 responses from the healthcare professionals who were invited to participate. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows: Inter-professional wellbeing, Being in a professional comfort zone, and Improved quality of care. The themes are related to teams, individuals and care, respectively.CONCLUSIONS: Healthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used for information in future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then tailor the conditions. Finally, this study contributes to the reflection upon and evaluation of appropriate CESS outcomes in general.

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

The Oxford Handbook of Ethics of AI ◽

10.1093/oxfordhb/9780190067397.013.45 ◽

2020 ◽

pp. 702-718 ◽

Cited By ~ 1

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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