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

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.

2014 ◽  
Vol 23 (2) ◽  
pp. 203-213 ◽  
Author(s):  
Marit Silén ◽  
Mia Ramklint ◽  
Mats G Hansson ◽  
Kristina Haglund

Background: Ethics rounds are one way to support healthcare personnel in handling ethically difficult situations. A previous study in the present project showed that ethics rounds did not result in significant changes in perceptions of how ethical issues were handled, that is, in the ethical climate. However, there was anecdotal evidence that the ethics rounds were viewed as a positive experience and that they stimulated ethical reflection. Aim: The aim of this study was to gain a deeper understanding of how the ethics rounds were experienced and why the intervention in the form of ethics rounds did not succeed in improving the ethical climate for the staff. Research design: An exploratory and descriptive design with a qualitative approach was adopted, using individual interviews. Participants and research context: A total of 11 healthcare personnel, working in two different psychiatry outpatient clinics and with experience of participating in ethics rounds, were interviewed. Ethical considerations: The study was based on informed consent and was approved by one of the Swedish Regional Ethical Review Boards. Findings: The participants were generally positive about the ethics rounds. They had experienced changes by participating in the ethics rounds in the form of being able to see things from different perspectives as well as by gaining insight into ethical issues. However, these changes had not affected daily work. Discussion: A crucial question is whether or not increased reflection ability among the participants is a good enough outcome of ethics rounds and whether this result could have been measured in patient-related outcomes. Ethics rounds might foster cooperation among the staff and this, in turn, could influence patient care. Conclusion: By listening to others during ethics rounds, a person can learn to see things from a new angle. Participation in ethics rounds can also lead to better insight concerning ethical issues.


2018 ◽  
Vol 26 (7-8) ◽  
pp. 2351-2363 ◽  
Author(s):  
Pernilla Pergert ◽  
Cecilia Bartholdson ◽  
Klas Blomgren ◽  
Margareta af Sandeberg

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.


2016 ◽  
Vol 23 (8) ◽  
pp. 825-837 ◽  
Author(s):  
Dara Rasoal ◽  
Annica Kihlgren ◽  
Inger James ◽  
Mia Svantesson

Background: Ethically difficult situations are frequently encountered by healthcare professionals. Moral case deliberation is one form of clinical ethics support, which has the goal to support staff to manage ethical difficulties. However, little is known which difficult situations healthcare teams need to discuss. Aim: To explore which kinds of ethically difficult situations interprofessional healthcare teams raise during moral case deliberation. Research design: A series of 70 moral case deliberation sessions were audio-recorded in 10 Swedish workplaces. A descriptive, qualitative approach was applied, using thematic content analysis. Ethical considerations: An advisory statement specifying no objections to the study was provided from an Ethical Review Board, and consent to be recorded was assumed by virtue of participation in the moral case deliberation. Findings: Three themes emerged: powerlessness over managing difficult interactions with patients and next-of-kin, unease over unsafe and unequal care, and uncertainty over who should have power over care decisions. The powerlessness comprised feelings of insufficiency, difficulties to respond or manage patient’s/next-of-kin’s emotional needs or emotional outbursts and discouragement over motivating patients not taking responsibility for themselves. They could be uncertain over the patient’s autonomy, who should have power over life and death, disclosing the truth or how much power next-of-kin should have. Discussion: The findings suggest that the nature of the ethically difficult situations brought to moral case deliberations contained more relational-oriented ethics than principle-based ethics, were permeated by emotions and the uncertainties were pervaded by power aspects between stakeholders. Conclusion: MCD can be useful in understanding the connection between ethical issues and emotions from a team perspective.


2017 ◽  
Vol 26 (2) ◽  
pp. 541-552 ◽  
Author(s):  
Kwisoon Choe ◽  
Yoonjung Kim ◽  
Yoonseo Yang

Background: Pediatric nurses experience ethically difficult situations in their everyday work. Several studies have been conducted to reveal ethical issues among pediatric nurses; we do not think their ethical difficulties have been explored sufficiently from their own perspective. Objectives: This study aimed to explore the ethical difficulties faced by pediatric nurses during bedside care for hospitalized children. Methods: A phenomenological approach was used to collect and analyze interview data from 14 female pediatric nurses in South Korea. Ethical considerations: Ethical review was obtained from an ethics committee. The participants were informed about the aim of the study, and voluntary participation, anonymous response, and confidentiality were explained to them. Findings: Three themes emerged from the analysis: ethical numbness in a task-oriented context, negative feelings toward family caregivers, and difficulty in expressing oneself in an authoritative climate. Conclusion and implications: We need to develop strategies to manage ethical difficulties at an institutional level. Furthermore, it is important that pediatric nurses have the opportunity to communicate with fellow nurses and other medical staff regarding ethical difficulties. In addition, cultivation of pediatric nurses’ moral, ethical, and philosophical thinking patterns requires the immediate provision of continuous education in nursing ethics at the site of clinical nursing, time to discuss ethical difficulties, and other supportive measures. Findings indicated that, to provide high-quality patient-centered care, we should enhance nurses’ ethical sensitivity and autonomy and improve the ethical climate in hospitals.


2021 ◽  
pp. 096973302199416
Author(s):  
Päivi Ventovaara ◽  
Margareta af Sandeberg ◽  
Janne Räsänen ◽  
Pernilla Pergert

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.


2015 ◽  
Vol 23 (4) ◽  
pp. 421-431 ◽  
Author(s):  
Cecilia Bartholdson ◽  
Kim Lützén ◽  
Klas Blomgren ◽  
Pernilla Pergert

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.


Delirium is a common serious complication in dementia that is associated with poor prognosis and a high burden on caregivers and healthcare professionals. Appropriate care is therefore important at an early stage for patients with delirium superimposed on dementia To gain insight into the care of six patients with delirium superimposed on dementia, 19 semi-structured interviews were conducted focused on the experiences of caregivers and professionals. The interviews revealed four themes that appeared to play a role: 1. experiences with and views on behavioral problems of these patients, 2. recognition and diagnosis of delirium in dementia, 3. views on good care and 4. organizational aspects. Knowledge gaps about delirium in dementia, as well as ethical considerations, play an important role in organizing timely and adequate care for patients with delirium superimposed on dementia.


Author(s):  
Alessandro Blasimme ◽  
Effy Vayena

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.


BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e042726
Author(s):  
Stefan Nilsson ◽  
Angelica Wiljén ◽  
Jonas Bergquist ◽  
John Chaplin ◽  
Ensa Johnson ◽  
...  

IntroductionThis study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5–17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison.Methods and analysisBoth effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child’s perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology.Ethics and disseminationEthical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council’s guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals.Trial registrationClinicalTrials.gov; NCT04433650.


2021 ◽  
pp. 147775092110366
Author(s):  
Harika Avula ◽  
Mariana Dittborn ◽  
Joe Brierley

The field of Paediatric Bioethics, or ethical issues applied to children's healthcare, is relatively new but has recently gained an increased professional and public profile. Clinical ethics support to health professionals and patients who face ethical challenges in clinical practice varies between and within institutions. Literature regarding services available to paediatricians is sparse in specialist tertiary centres and almost absent in general paediatrics. We performed a mixed-methods study using online surveys and focus groups to explore the experiences of ethical and legal dilemmas and the support structures available to (i) paediatric intensive care teams as a proxy for specialist children's centres and (ii) paediatricians working in the general setting in the UK. Our main findings illustrate the broad range of ethical and legal challenges experienced by both groups in daily practice. Ethics training and the availability of ethics support were variable in structure, processes, funding and availability, e.g., 70% of paediatric intensive care consultants reported access to formal ethics advice versus 20% general paediatricians. Overall, our findings suggest a need for ethics support and training in both settings. The broad experience reported of ethics support, where it existed, was good – though improvements were suggested. Many clinicians were concerned about their relationship with children and families experiencing a challenging ethical situation, partly as a result of high-profile recent legal cases in the media. Further research in this area would help collect a broader range of views to inform clinical ethics support's development to better support paediatric teams, children and their families.


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