BackgroundIn Greece, there is still limited research on death in isolation due to COVID-19. This deserves attention because of the recent financial crisis, which profoundly impacted public health, and the high relevance of the Hippocratic tradition to the moral values of clinical practice.MethodsA prospective qualitative study using in-depth interviews with 15 frontline nursing practitioners working in a COVID-19 ward or intensive care unit (ICU) was conducted from July 2021 to December 2021.ResultsThe inability of family members to say a final goodbye before, during, or after death by performing proper mourning rituals is extremely inhuman and profoundly impacts the mental health status of patients, family members, and nursing practitioners. Patients and their family members strongly desire to see each other. Epidemiology, liability, and proper nursing performance emerged as reasons for the enforced strict visitation restrictions. Participants emphasized that visitations should be allowed on an individual basis and highlighted the need for the effective use of remote communication technology, which, however, does not substitute for in-person contact. Importantly, physicians allowed “clandestine” visits on an individual basis. Nursing practitioners had a strong empathic attitude toward both patients and their families, and a strong willingness to provide holistic care and pay respect to dead bodies. However, they also experienced moral distress. Witnessing heartbreaking scenes with patients and/or their families causes nursing practitioners to experience intense psychological distress, which affects their family life rather than nursing performance. Ultimately, there was a shift from a patient-centered care model to a population-centered care model. Furthermore, we identified a range of policy- and culture-related factors that exaggerate the negative consequences of dying alone of COVID-19.ConclusionThese results reinforce the existing literature on several fronts. However, we identified some nuances related to political decisions and, most importantly, convictions that are deeply rooted in Greek culture. These findings are of great importance in planning tailored interventions to mitigate the problem of interest and have implications for other similar national contexts.
Background Working as a neonatologist in a neonatal intensive care unit (NICU) is stressful and involves ethically challenging situations. These situations may cause neonatologists to experience high levels of moral distress, especially in the context of caring for extremely premature infants (EPIs). In Greece, moral distress among neonatologists working in NICUs remains understudied and warrants further exploration. Methods This prospective qualitative study was conducted from March to August 2022. A combination of purposive and snowball sampling was used and data were collected by semi-structured interviews with twenty neonatologists. Data were classified and analyzed by thematic analysis approach. Results A variety of distinct themes and subthemes emerged from the analysis of the interview data. Neonatologists face moral uncertainty. Furthermore, they prioritize their traditional (Hippocratic) role as healers. Importantly, neonatologists seek third-party support for their decisions to reduce their decision uncertainty. In addition, based on the analysis of the interview data, multiple predisposing factors that foster and facilitate neonatologists’ moral distress emerged, as did multiple predisposing factors that are sometimes associated with neonatologists’ constraint distress and sometimes associated with their uncertainty distress. The predisposing factors that foster and facilitate neonatologists’ moral distress thus identified include the lack of previous experience on the part of neonatologists, the lack of clear and adequate clinical practice guidelines/recommendations/protocols, the scarcity of health care resources, the fact that in the context of neonatology, the infant’s best interest and quality of life are difficult to identify, and the need to make decisions in a short time frame. NICU directors, neonatologists’ colleagues working in the same NICU and parental wishes and attitudes were identified as predisposing factors that are sometimes associated with neonatologists’ constraint distress and sometimes associated with their uncertainty distress. Ultimately, neonatologists become more resistant to moral distress over time. Conclusions We concluded that neonatologists’ moral distress should be conceptualized in the broad sense of the term and is closely associated with multiple predisposing factors. Such distress is greatly affected by interpersonal relationships. A variety of distinct themes and subthemes were identified, which, for the most part, were consistent with the findings of previous research. However, we identified some nuances that are of practical importance. The results of this study may serve as a starting point for future research.
BackgroundDying in isolation and without saying a goodbye before, during and after death causes patients, families and health providers to suffer greatly. In Greece, there is still limited knowledge about dying in isolation as perceived by frontline nursing practitioners working in a COVID-19 ward or ICU. Nursing practitioners spend a lot of time near their patients. Greece is most vulnerable country to the international problem of dying in isolation during the COVID-19 pandemic. MethodsA prospective qualitative study using in-depth interviews with fifteen frontline nursing practitioners working in a COVID-19 ward or ICU was conducted from July 2021 through December 2021. We performed a thematic analysis of the data. ResultsDying in isolation without saying a goodbye before, during or after death emerged as an extremely inhuman experience that critically ill covid patients and their loved ones had to go through. Fear of spreading COVID-19 infection, fear of liability, and fear of hindering the performance of nursing duties were emerged as main reasons behind strict visitation restrictions. Patients and family members were reported to have expressed very strong desire to communicate and interact with each other. Most participants were shown to be with high levels of empathy, willingness to provide holistic care. Furthermore, most participants were shown to be with high levels of psychological and moral distress. All participants held that visitations should be allowed on an individual basis, and remote communication technology should be available to any covid patient. Importantly, it was identified in this study that physicians’ and nursing practitioners’ discretion and goodwill can significantly mitigate the problem of dying alone. In some COVID-19 health care settings visitations were allowed at physicians’ discretion. These “clandestine” visitations were mentioned as practices that existed in reality, even though they were not officially recognized by the Greek rules. Furthermore, the quality of nursing care seemed to have shifted towards a broader definition. Political neglect was a factor that emerged as a major factor that enlarges the problem of dying in isolation. Finally, and most importantly, a shift towards a less patient-centered model of care was emerged from the data analysis. ConclusionThe results reinforce the existing literature on many fronts. However, we identified some nuances that are of great importance in planning tailored interventions to mitigate the problems related to dying in isolation from COVID-19, and most importantly, hold down the commonly accepted patient-centered model of care. On the account of the patient-centered model of care and the modern (broad, positive-holistic) concept of health, providing holistic care for critically ill covid patients is both an institutional duty and a moral obligation.
Background Working as neonatologist in the neonatal intensive care unit (NICU) is stressful and involves ethically challenging situations. Neonatologists’ periviable resuscitation or medical futility decisions involve an attempt to determine the infant’s best interest and strike a balance between infant’s best interest and respect for parents' autonomy. This may cause neonatologists to develop high levels of moral distress, especially when caring for extremely premature infants (EPIs) under high levels of prognostic uncertainty and without guidelines. In Greece, few qualitative studies are focusing primarily on neonatologists and provide little insight into how neonatologists working in the NICU make or perceive their decisions. Moral distress among neonatologists working in the NICU is a topic that is still understudied and warrants further exploration. Methods This was a prospective qualitative study that used semistructured interviews of twenty neonatologists who had been working in NICUs in Greece for at least one year. The study was conducted between March 2022 and August 2022. A thematic analysis of the data was performed. Results A variety of distinct themes and subthemes emerged from the interview data analysis. Neonatologists are confronted with moral conflicts perceived as irreconcilable. Furthermore, they prioritize their traditional (Hippocratic) role as healers. Importantly, neonatologists seek out a third-party support for their decisions to reduce their decision uncertainty. In addition, from the interview data analysis emerged multiple predisposing factors that further increase the neonatologists’ uncertainty distress or let it continue elevated, as well as multiple predisposing factors that may be associated with either neonatologists’ constraint distress or their uncertainty distress. Among the predisposing factors that further increase the neonatologists’ uncertainty distress or let it continue elevated have been identified, the lack of neonatologist’s previous experience, the lack of clear and adequate clinical practice guidelines / recommendations/ protocols, the shortage of healthcare resources, the fact that in the context of neonatology best interest and quality of life are determined with difficulty, the administration of an off-label medication and the need for making decisions in a short time frame. NICU directors, neonatologists’ colleagues working in the same NICU and parental wishes and attitudes have been identified as predisposing factors that may be associated with either neonatologists’ constraint or their uncertainty distress. Ultimately, neonatologists become more resistant to moral distress over time Conclusions We concluded that neonatologists’ moral distress should be conceptualized in the broad sense of the term and is strictly associated with multiple predisposing factors. It is greatly affected by interpersonal relationships. A variety of distinct themes and subthemes were identified, which, for the most part, were consistent with prior literature. However, we identified some nuances that are of practical importance. The results of this study support the need for establishing Institutional Ethics Committees in every healthcare setting and make neonatologist aware of them. Furthermore, the results of this study support the need to make professional psychological counselling available in every NICU. Ultimately, the results of this study may serve as a starting point for future research.
BackgroundGiven that having an infant in the NICU is a morally stressful event for parents and preterm birth rates are increasing worldwide, parent moral distress is a matter of public health. While moral distress in the clinical context is already a widely explored phenomenon, the parent moral distress still remains a largely under-explored complex phenomenon. Methods This is a prospective qualitative study using semi-structured interviews of seventeen parents (mothers) who previously had an infant in the NICU. The study conducted between February 2021 and August 2021. A thematic analysis of the data was performed. Results While parents with infants in the NICU initially needed for having their decisions respected by physicians, they ultimately shew a tolerant attitude towards benevolent medical paternalism. However, many physician-related factors (i.e. uncertainty, discrepancy of opinion, operational behavior, lack of communicative or empathetic behavior, previous malpractice) facilitate parent moral distress. The important role of the family pediatrician in creating parent moral distress is highlighted. The same holds for family/social environment – related factors. Furthermore, the role of parent’s internal factors (especially spiritual/existential core values or beliefs) as well as the role of NICU environment-related factors (such as the image of a long-suffering infant, preventing mothers from providing their own milk for their infants and having a skin-to-skin contact with them) in creating parent moral distress are highlighted. Moral residue no more than mild was found. Moreover, parent moral schisma is emerged as a conceptually distinct from moral distress phenomenon. Last, the findings of this study confirm the relational account of parental moral distress offered by Mooney-Doyle and Ulrich. ConclusionsWhile many findings of the present study are in line with previous studies, our data analysis revealed findings which are little recognized in the available literature. Parents showed tolerant attitudes towards benevolent medical paternalism. No more than mild moral residue has been found. The most relevant categories of variables associated with parent moral distress were a) physician-related (various factors), b) parent-related, c) parent’s context (family or broader social)-related, and d) NICU environment-related. Furthermore, parent moral distress and parent moral schisma are conceptualized as conceptually distinct albeit strictly related or overlapping phenomena. The findings of this study support the relational account of parent moral distress.
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